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V09-05-06

INTERNATIONAL OVERVIEW OF THE EVIDENCE ON EFFECTIVE SERVICE MODELS IN CHRONIC

DISEASE MANAGEMENT

DECEMBER 2005

National Public Health Service for Wales Chronic disease management models

Contact details – Dr Mary Webb Public Health Practitioner National Public Health Service Temple of Peace & Health Cardiff CF10 3NW

Email: [email protected]

Mrs Helen Howson Head of Chronic Conditions and Community Health Policy Branch Welsh Assembly Government

Cardiff CF10 3NQ Email: [email protected]

Copyright © 2005 National Public Health Service for WalesAll rights reservedAny unauthorised copying without prior permission will constitute an infringement of copyright

Author: Mary Webb Date: December 2005 Status: Final/tt/file_convert/6015a20db8e58b17713a6617/document.doc

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PREFACE

This document was commissioned by the Chronic Conditions and Community Health Policy Branch of the National Assembly for Wales and is the result of joint working with the National Public Health Service for Wales (NPHS). The review of the international evidence for effective models in chronic disease management is the second phase of continuing work on chronic conditions. The evidence on effective ways of managing chronic conditions will be used to inform the development of future work on chronic disease management in Wales.

We would like to acknowledge the help of Dr Alexander Tsai, Case Western School of Medicine for allowing access to unpublished data and to Dr Nina Williams, Dr Sarah Aitken, Sandra Caple, Isabel Puscas and Tracey Deacon from the NPHS, for their helpful comments.

KEY MESSAGES

Chronic disease is an important health issue and is growing in importance. The evidence from this overview suggests that good chronic disease

management offers real opportunities for improvements in patient care and service quality and effective use of resources.

There is currently insufficient high quality evidence to indicate that existing international models in chronic disease management (CDM) are directly transferable to the UK.

There is some evidence that chronic disease management programmes based on the Chronic Care Model can improve the quality of care for people with chronic diseases.

Plans are being made internationally to continue research to review and identify the key elements of effective models of CDM, which will further inform the work of health and social care planners and commissioners.

From existing research, information and good practice a number of key elements consistently appear. These are:

Broad, multi-disciplinary approach to develop and manage care programmes

Targeting high risk people Specialist skills, information and good practice sharing Patient-centred care and genuine partnership between health

professionals and patients in managing conditions Self management education, information and support services Self monitoring and telemedicine


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CONTENTS

Page number

Preface & Key messages

Executive summary

3

5

1. Background 9

2. Objectives 10

3. Methods 11

4 Results 12

4.1 ORGANISATION OF CARE 13 4.1.2 Broad chronic care programmes 13

4.1.3 Integration of care 19

4.2 SYSTEMS OF CARE 21 4.2.1 Care pathways 21 4.2.2 High risk people- risk stratification 22 4.2.3 Case management 22 4.2.4 Data systems for surveillance of patients with

chronic conditions4.2.5 Sharing skills and knowledge

23

24

4.3 PATIENT SELF CARE INTERVENTIONS 24 4.3.1 Patient involvement in decision making 25 4.3.2 Self management education 26

4.3.2 Self monitoring and telemedicine 27

5. Summary and conclusions 29

6. References 31 Appendix 1 The Chronic Care Model 36

Appendix 2 Key characteristics of the Kaiser, Evercare & Pfizer approach to managed care

37

Appendix 3 Pyramid of care 38 Appendix 4 Initial scoping search 39 Appendix 5 Main search strategy 41 Appendix 6 High level search strategy 45 Appendix 7 Evidence levels and quality grading 47 Appendix 8 The Innovative Care for Chronic Conditions

(ICCC) framework48

Appendix 9 Evidence table 49


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EXECUTIVE SUMMARY

The term chronic disease refers to a disease or disorder that continues over an extended period of time and causes continuous or episodic periods of incapacity. Such diseases are often referred to as long-term conditions chronic conditions, chronic diseases, lifelong illnesses/diseases/conditions, with examples including diabetes mellitus, chronic obstructive pulmonary disease, asthma, arthritis, epilepsy and heart disease. Existing evidence confirms that people with chronic conditions are high-frequency users of health services and comprise up to 80% of consultations in primary care and 60% of secondary care admissions in the United Kingdom (UK).

Chronic disease management (CDM) has been defined ‘as a system of coordinated healthcare interventions and communications for populations with conditions, in which patient self-care efforts are significant.’ Improving CDM has become a high political priority in the UK, supported by a move away from disease specific initiatives, such as the national service frameworks, to broad generic integrated management programmes for chronic conditions. All chronic conditions place similar demands on health systems, patients and families and comparable ways of organising health care are likely to be effective regardless of the bio-medical aetiology. The aim of this document is to review existing international research to consolidate the evidence of effective service models in managing chronic conditions. Many of the existing broad disease management programmes are based on the Chronic Care Model (CCM) originally developed in the United States (US) and from where considerable evidence on CDM originates. The CCM (Appendix 1) contains four system components (self-management support; delivery system design; decision support & clinical information systems), that are important for providing optimum care for people with chronic conditions. Considerable differences exist between the organisation of the US and UK healthcare systems and it is questionable whether, the evidence on effectiveness of the CDM programmes in the US is directly transferable to the National Health Service (NHS). A number of other countries world-wide are developing CDM programmes and there is an increasing body of evidence that generally confirms the US experience of improvements in the quality of care for patients with chronic conditions with such programmes.

Based on an international review of best practice, the World Health Organisation (WHO) expanded the CCM and created the Innovative Care for Chronic Conditions (ICCC) Framework (Appendix 8). The ICCC framework is linked conceptually to the CCM which reflects the context of international health care. It also includes two additional components - community organisation and community resources in recognition of the impact of these on CDM. There is some evidence that broad chronic care programmes containing components of the CCM are effective, but there is currently insufficient high quality evidence to determine how health care systems can be better organised

This non systematic review of the evidence concentrates on assessing initiatives that work well across a range of chronic conditions. It focuses on broad chronic care programmes rather than one specific condition and assesses the evidence for three main research questions:


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The effectiveness of the different types of programmes in CDM The impact of CDM programmes on outcomes The commonly identified effective elements of CDM programmes

The major health care databases were searched and these searches were supplemented with the reference lists of identified articles and reviews (Appendix 5). High level searching using meta-search engines, other databases and the websites of relevant agencies was also performed in order to maximise the identification of relevant literature (Appendix 6). Due to the pressure of time-constraints it was necessary to develop a pragmatic approach to the selection of articles, concentrating initially on published systematic reviews and randomised trials. An update (2002- 2005) of a published search, resulted in 7660 articles and these were screened for relevance. Websites devoted to CDM were also searched together with a limited search of the reference lists of key documents. A total of 91 articles contributed to this overview.

The overview is divided into interventions that address the:

Organisation of care Systems of care Patient self care/self management

ORGANISATION OF CARE

Broad chronic care programmesBroad chronic care programmes

In the UK, the most often cited programmes for CDM are the Kaiser, Evercare and Pfizer approaches and a number of pilot sites were identified. A number of countries have implemented CDM programmes using building blocks from the ICCC framework. High quality evidence for their effectiveness is as yet unavailable, but evaluation studies are ongoing. There is however, some evidence that broad chronic care programmes tend to improve the quality of care, clinical outcomes and to reduce the use of healthcare resources and costs. There is insufficient clear evidence available as to which elements of these programmes are most effective.

Integrated care Integrated care

The evidence of the effectiveness of integrating primary, secondary and community care to support improved CDM is inconsistent and the published UK literature does not currently confirm the positive effects on outcomes found in the studies performed in the US. There is however some evidence that healthcare resource use is improved and that costs can be reduced. The evidence on the effects of multidisciplinary teams (MDTs) on clinical outcomes is inconsistent, but evidence suggests that MDTs can improve patient satisfaction and healthcare costs. Providing care in the home can also reduce healthcare costs, but the evidence is insufficient at present to draw any conclusions about the effect on quality of care. Conclusions from high quality evidence currently available could not be made about the effectiveness of nurse-led care, chronic care clinics or outreach care.

SYSTEMS OF CARE


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As well as the literature on broad chronic care programmes, there is evidence on the use of specific tools, systems and processes that have been tested in CDM and these are described below.

Evidence-based care pathways Evidence-based care pathways

There is insufficient consistent evidence to judge the effectiveness of care pathways across CDM. The majority of the published literature reviewed is disease specific and the evidence for effectiveness of care pathways varies from one condition to another.

Targeting high risk people – risk stratificationTargeting high risk people – risk stratification

A great deal of the evidence on targeting high risk individuals with chronic conditions focuses on case management. The evidence relating specifically to case management is dealt with in the section on case management below. From the papers reviewed there is high quality evidence that identifying and targeting high risk individuals has a beneficial effect on clinical outcomes and may reduce resource use. The evidence on methods for risk stratification suggests that predictive modelling is one of the most accurate techniques for CDM.

Case managementCase management

Case management is a method of coordinating services for individuals with chronic conditions, by assigning each person a case manager. There is a considerable amount of literature on case management, but there is a lack of good quality, consistent evidence for the effectiveness of case management for people with chronic conditions.

Data systems for surveillance of patients with chronic conditionsData systems for surveillance of patients with chronic conditions

The evidence is inconclusive on the use of routine monitoring and decision support systems to identify people with chronic conditions most at risk of clinical deterioration and hospitalisation. Data collection systems are also important for monitoring and there is some evidence to support the use of disease registries.

Sharing skills and knowledge Sharing skills and knowledge

There is some evidence that sharing skills and knowledge is an effective method for improving the learning skills of health professionals. Of the different methods tested, the evidence indicates that group educational sessions and audit and feedback were effective, providing the latter formed part of a broader strategy.

PATIENT SELF CARE INTERVENTIONS

Patient involvement in decision-makingPatient involvement in decision-making

There is evidence that involving people with chronic conditions in decision making can improve their satisfaction with their care. The evidence also indicates that not everyone with a chronic condition will be inclined to be involved in making decisions


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about their care. There is no clear evidence on the best methods to involve people in decision-making.

There is some evidence on the improvement in people’s knowledge of their condition with the provision of clear accessible information and for the use of lay educators and group educational sessions.

Self management educationSelf management education

There is good evidence that self management education programmes help people learn to manage their own conditions. Such programmes also tend to reduce symptoms and visits to primary and secondary care.

Self monitoring and telemedicineSelf monitoring and telemedicine

There is some evidence that self monitoring may improve clinical outcomes for people with some specific conditions. Monitoring using computers and telecommunications may be associated with improved clinical outcomes for certain conditions. There is no conclusive evidence on resource use in this area.


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1. BACKGROUND

Chronic conditions are conditions that currently cannot be cured and include diabetes, mellitus, chronic obstructive pulmonary disease, asthma, arthritis, epilepsy and heart disease. A recent report from the World Health Organization (WHO) emphasises the need to expand the conditions considered to be chronic to include persistent communicable diseases such as HIV/AIDS, tuberculosis, long-term mental disorders and ongoing physical impairments.1 The terms chronic condition, chronic disease, life-long illness/disease/condition, long-term disease/condition are frequently used interchangeably to describe these conditions.2 3

Chronic disease management (CDM) is a means to coordinate care, focusing on the whole clinical course of a disease. A definition of CDM given by the RCP/RCGP/NHS alliance is ‘a system of coordinated health interventions and communications for populations with chronic conditions in which patient self care is significant’.4

The pioneering work on chronic disease management took place in the United States (US) with the development by Wagner of the Chronic Care Model (CCM).5 A diagram of the CCM is shown in Appendix 1. The CCM is an evidence-based, conceptual framework that describes changes to the healthcare system that help practices, particularly those in primary care settings, to improve outcomes for patients with chronic illness. The CCM describes the interacting system components that are important for providing good chronic illness care and comprises four components:

self–management support delivery system design decision support clinical information systems

In the US, United Healthcare (Evercare), Kaiser Permanente and Pfizer Healthcare have developed approaches to caring for people with chronic conditions that have informed the recommended approach in England. Several primary care trusts (PCTs) in England are working with health organisations from the US to determine whether the three main programmes (Kaiser, Evercare and Pfizer) are suitable for use in Britain for people with chronic conditions. The major characteristics of these three programmes are shown in Appendix 2.

There are large numbers of people with chronic conditions and in Wales the provisional results of the latest Welsh Health Survey indicate that one third of adults, an estimated 800 thousand adults, report having at least one chronic condition.6

Some features of the National Health Service (NHS) sustain support for people with chronic conditions. These include well established teams in primary care and a network of other community providers, including pharmacists and therapists.7

However, the variations in care for people with chronic diseases by general practice8

are currently unsupportable and policy developments are looking to reduce these variations.


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In terms of health policy imperative, the impact on acute hospital services of people with chronic conditions has caused the latter to gain importance rapidly on the political agenda in the United Kingdom (UK). In England this has culminated in the development of the National Health Service and Social Care Model in 2005.9 The practical management of chronic conditions proposed in England is based on the ‘pyramid of care’ adapted from Kaiser (see Appendix 3 for diagram). This structure for care emphasises the importance of active identification and care management of highly complex patient conditions, the improved care of high risk patients using multidisciplinary disease management protocols and the encouragement of self management for the majority of patients. The model draws heavily on the US ideas about case management and proposes the creation of 3000 community matrons to perform this role with the most vulnerable patients.

CDM is a national priority in all parts of the UK and forms a core part of some of the national service frameworks (NSFs). There is now a shift away from the condition specific approach of the majority of the NSFs (e.g. the diabetes NSF) towards a population-based approach (as with the older people’s NSF) that includes containment of the prevalence of chronic conditions through the public health agenda. In Wales, effective delivery of CDM is integrated as a key theme within the recently published health strategy document Designed for Life10 and is seen as central to realising the recommendations of the Wanless Report.11 Throughout Wales, disease management services will be remodelled over the next three years to develop a new care programme approach within an integrated chronic disease framework. In Scotland there is an ongoing programme looking at different ways to deliver chronic disease management.12

There is a great deal of published evidence on how improving care for people with chronic conditions can lead to enhanced outcomes, although exactly how health care systems should be organised remains a matter of debate.13 Furthermore innovative models for CDM aimed at improving outcomes in chronic care have been described but determining which models are most successful is difficult because of the lack of agreed definitions for each model and because of the overlap of elements between the different models.14

2. OBJECTIVES

The National Public Health Service (NPHS) and the Welsh Assembly Government have recently published a profile of long-term and chronic conditions in Wales3 and the second phase of this work is designed to identify and analyse different service models for chronic disease management, from both inside and outside of the UK and to review the evidence to answer the three questions below: -

What is the evidence for?

1. The effectiveness of the different types of programmes for chronic disease management

2. The impact of chronic disease management programmes on outcomes3. The effective components of chronic disease management programmes


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3. METHODS

The three research questions in Section 2 are presented in the initial free form structure but were converted to more structured questions for searching using the Population, Intervention, Comparison and Outcome (PICO) format.15

3.1 Literature searching:

Systematic searching: A scoping search was initially performed by Isabel Puscas from the Library and Knowledge Management Service, National Public Health Service to identify major papers on published evidence (see Appendix 4 for terms and databases searched).

For this overview the search used by Weingarten in 200216 for the meta-analysis was obtained and repeated for 2002-2005 (see Appendix 5). The search period ended on the 10th August 2005.

High level searching: The type of literature on chronic disease management necessitated the use of a pragmatic approach to searching for evidence in order to achieve production of the review within the timescales for delivery. It is clear that there had to be a balance between timeliness and rigour. It is well known that the classical databases for medical literature, such as Medline, do not adequately index such literature. The reviewer used validated methods that involved the use of meta-search engines and other databases for ‘high level’ searching to quickly identify relevant evidence (Appendix 6)

Identified titles and abstracts were initially screened for relevance to the clinical question by the reviewer. The following inclusion criteria were used.

Programmes Not condition/disease specific – apart from where disease specific literature

had implications for generic models of careCountries

US UK and the rest of Europe Australia New Zealand Canada Singapore

Language English French German Spanish

3.2 Critical appraisal


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The full papers were critically appraised using the methodology from the National Institute for Health and Clinical Excellence (NICE) Guideline Development Methods manual 17and the data relevant to the question was entered into an evidence table (Appendix 9). Owing to practical limitations a single reviewer undertook the final selection, critical appraisal and data extraction.

3.3 Synthesising evidence

Until recently many outcome studies of CDM programmes reported in peer reviewed journals have reported extraordinary results, sometimes as a consequence of poor study design.18 The two predominant categories of study design relevant to CDM research are the randomised controlled trial (RCT) and observational studies. Observational studies are known to be susceptible to bias (see 18). Most CDM programmes are currently being evaluated using a pre-post design with no control group e.g. Cretin et al.19 Without a control group the influence of several sources of bias and/or extraneous confounding factors offer plausible explanations for any changes from those observed at baseline. It was therefore very important that the studies evaluated contained enough information to determine:

The degree of homogeneity Adequate sample size Study duration – at least 6 months Attrition – survival analysis and case series regression Adequate description of intervention Outcome measures that relate directly to the intervention Adequate blinding in RCTs Appropriate use of statistical methods in the analysis

There were very few randomised controlled trials (RCTs) relevant to the three research questions. This is a widely acknowledged problem with health service research and every effort was made to maximise the retrieval of relevant high quality literature. Where available, evidence from good quality systematic reviews or meta-analyses was appraised and included in the evidence tables. However, not all studies were individually appraised.

The tables recommended for use in the NICE methodology manual were modified to accept the type of studies identified for chronic disease management. The quality of the evidence was graded using the NICE hierarchy of evidence and the quality checklists. Evidence was rejected if graded as poor quality, apart from where it was of Level 1 type (see Appendix 7 for explanation of evidence grading system) and was highly relevant to the questions.

4. RESULTS

The initial scoping search produced a wide range of documents and gave an indication of the large amount of literature on CDM. The update of the Weingarten searchError:Reference source not found for 2002-2005, produced a total of 7660 papers (Appendix 5). With the time limitation for production of the overview and the fact that the remit was not to produce a systematic review of the literature on CDM


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programmes, it was necessary to select the papers that were most relevant to the questions. The recent review of the literature by Singh on improving care for people with chronic conditions20 provided a useful overview of the current literature and served as a template for reporting the evidence assessed in the present review. The results are divided into three sections summarising the evidence for interventions directed at:

1. Organisation of care2. Systems of care3. Patient self care/self management

Where the evidence was sufficient, each of the above sections was subdivided into three subsections:

i Effect on quality of careii Effect on clinical outcomesiii Effect on resource use

A summary of evidence is given in the box at the end of each section.

4.1. ORGANISATION OF CARE 4.1.2 BROAD CHRONIC CARE PROGRAMMES

In England, the Department of Health’s strategy for supporting people with chronic conditions uses the principles of broad chronic care programmes that are designed to work across a range of chronic conditions, rather than on one specific disease.Error:Reference source not found Many such programmes are based on the CCM, (see Appendix 1 for diagram). Based on a two year review of models and best practice around the world, the WHO’s Health Care for Chronic Conditions team created a comprehensive guide – Innovative Care for Chronic Conditions (ICCC) Framework.Error: Reference source not found The focal point of the CCM is productive interactions between informed activated patients and prepared proactive practice teams. The ICCC framework extends this dyad to a triad through the inclusion of community partners (Appendix 8) to emphasise the critical role that community leaders and caregivers play in many places. The framework is comprised of fundamental components within the patient (micro), health care organisation and community (meso), and policy (macro) levels. These components are described as building blocks that can be used to create or re-design a health care system to manage more effectively long term health problems. The ICCC framework is centred on the idea that the best outcomes are obtained when a health care triad is formed. This triad is a partnership among patients and families, health care teams and community supporters and is influenced and supported by the larger health care organisation, the wider community and the policy environment. When the integration of the components is optimal, the patient and family become active participants in caring for chronic conditions, supported by the community and the health care team.21


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A number of countries have implemented innovative programmes for chronic conditions using building blocks from the framework:

United Kingdom In the UK the three most commonly cited frameworks for managing chronic conditions are the Kaiser, Evercare and Pfizer approaches. The key principles are shown in Appendix 3 (modified from Singh).Error: Reference sourcenot found Another approach to CDM that was being tested in four trusts in England, under the aegis of the NHS Modernisation Agency22, is the UK Pursuing Perfection Programme. This programme is directed by Berwick at the Institute of Healthcare Improvement in the US and is also being piloted at nine other international sites.

The King’s Fund assessed five US organisations providing managed care using, interviews and reviews of unpublished literature. The authors’ recommendations for the NHS are that a generic model of CDM should be developed, that risk stratification and case and disease management programmes in which support for self management is a central feature should be developed in every PCT.23

Matrix Research and Consultancy Ltd was commissioned by the NHS Modernisation Agency to perform three case studies comparing the different approaches to managing chronic conditions taken by Evercare, KP and Pfizer Healthcare Solutions. The report identifies the transferable learning for use by healthcare organisations and offers practical information about the process of change. The review also provides healthcare organisations with key learning and practical starting points in changing approaches to CDM.24

The Evercare model is also being evaluated at a national level (not in Wales) by the National Primary Care Research and Development Centre and an interim report was published in 2005. The interim results suggest that in its initial pilot schemes Evercare provides a way of identifying vulnerable older people, providing preventive health care, timely response to deteriorations in health and the potential to organise care around patients’ needs. The same principles also apply to some other models being developed in the NHS, but there is no published evidence to determine the relative effectiveness of the alternatives compared with the Evercare programme. One outcome reported is that a significant number of patients enrolled into Evercare appear to be unknown to existing services and it may be that Evercare and other intensive case management initiatives may identify unmet need that would lead to an increased demand on health services, but would improve healthcare delivery.25

The authors of the report conclude that the use of the Evercare dedicated tools to assist case management for vulnerable older people is not obligatory and other techniques and tools can instead be used. Although there is anecdotal evidence that the Evercare programme may have reduced hospital admissions, it is too early to say what size this reduction might be. Making favourable assumptions about the impact of Evercare on admissions, it was calculated that emergency admissions are unlikely to be reduced by more than 1% in the pilot PCTs. If fully scaled up to cover all patients over 65 with a history of two or more admissions in the previous year, the percentage of admissions avoided in the first year of the programme could rise to 6%. The analysis of hospital admission data show that Evercare's selection criterion of two unplanned hospital admissions in the previous year might not predict sufficiently


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accurately which older patients are at risk of unplanned admissions in future. For that purpose it may be important to develop new criteria. It is not known how much more effective the additional selection criteria used in some Evercare pilots, or those suggested in the DH policy on chronic conditionsError: Reference source not found would be in predicting patients at high risk of emergency admission.

Europe In many European countries there are well developed programmes for CDM. Some examples of potential solutions to the challenge of increasing numbers of people in Europe with chronic conditions are summarised by McKee and Nolte.26

These authors emphasise that comparative research on CDM to inform policy makers is difficult to obtain and international data compendiums such as that collated by the Organisation for Economic Cooperation and Development (OECD), focus almost exclusively on quantitative analysis. This emphasis reflects the increasing desire by governments and statutory agencies to monitor the performance of health systems. The NHS Plan has led to the creation of many quantitative performance targets and many of these targets divert attention from the needs of those whose care cannot easily be measured, in particular those with chronic diseases.Error: Reference sourcenot found

In many countries the professional division between nurses and doctors is being eroded, particularly in primary care. The model of primary care found in the UK also exists in Ireland, the Netherlands, Italy, Spain, Portugal and the Scandinavian countries. Where strong primary care teams exist, there has been a progressive move to nurse-led clinics for CDM and there is evidence from some countries of the success of such an approach. Error: Reference source not found

A common problem facing all countries is how best to manage the interface between primary and secondary care. There is considerable data demonstrating that many people are inappropriately occupying acute hospital beds27 and providing suitable alternatives has been a major challenge for health systems across Europe28, particularly in northern Europe where the breakdown of traditional extended families began in the 1960s; a pattern that occurred later in southern European countries. There is now an increasing number of examples of innovative care models in use in Europe, such as the French regional community based care programmes for patients with respiratory disease29, as well as projects using telemedicine.30 A recent paper evaluating these programmes for CDM in France concludes that one of the possible reasons that France is rated number one in overall health system performance by the WHO is the attention paid to CDM.Error: Reference source not found The chronic care provided by the French regional population-based prevention and disease management systems combine specialised medical care, assistive technology and home support. The French experience indicates that the starting point for the development of a national system is to begin with a ‘bench marked’ state or regional system. This idea is consistent with Denmark’s successful transformation of institution-based long-term care into an efficient national system of home and community based services.31 32 A recent report from the US Institute of Medicine33

also recommends a regional approach. The CCM model is also used in Denmark together with the Spanish home healthcare service model Error: Reference source notfound 34, but no evidence was found from evaluation studies.


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The German government’s proposals in 2002 to introduce CDM programmes met with opposition from physicians, who challenged the use of evidence based guidelines and feared that patient confidentiality would be breached by disclosure of data to health insurance companies. This resistance has now been overcome and disease specific programmes are being implemented.35

In the Netherlands since the beginning of the 1990s, the Dutch government has been actively implementing a policy aimed at improving the quality and increasing the quantity of care for people with chronic illness as well as reducing the social disadvantages associated with such conditions. An article comparing the development of integrated care for chronic conditions in the Netherlands and England concludes that the presence of fault-lines, such as those between short-term and long-term care in the Netherlands and the divisions between health and social care between the public, private and voluntary sectors in England have hindered integrated care development in both countries.36

Several European countries are looking at the hospital at home concept but to date the evidence for its cost effectiveness is inconclusive.37 The Transmural Care programme in the Netherlands is another attempt to try and bridge the gap between hospital and community care, although one study failed to demonstrate its effectiveness.38

Canada A great deal of work is being performed on improving CDM and there is a national consortium for chronic diseases that aims to provide practical examples, throughout the country of ways to manage chronic diseases. For example, in British Columbia the CDM programme has worked with Improving Chronic Illness Care (ICIC) in Seattle and has expanded the CCM to include health promotion and disease prevention.39

Australia The SA HealthPlus randomised trial was set up to test one coordinated care model for people with multiple needs across different chronic conditions and local health care systems in South Australia. The overall implementation of this model improved people’s health outcomes (SF-36 mental health and physical domains) but did not reduce costs. A commentary on the results of the trial concludes that the key elements of the SA HealthPlus model require further testing in the Southern Australian context and the framework for analysis needs to be expanded to take into account issues such as the characteristics of the organisation, environment, healthcare team and patient.40 The latter criteria are included in the framework proposed by Cretin et al. for evaluating collaborative interventions to improve CDM in the US.Error: Reference source not found New Zealand The Care Plus programme has been tested in three primary health organisations (PHOs) and an evaluation was published in 2004.41 Care Plus contains some elements of the CCM and aims to provide expanded, better coordinated and lower cost services from a range of health professionals. Eligible patients are high health users or those with chronic conditions that require intensive clinical management.

Far East & Asia In China and Singapore programmes to improve CDM are being developed and tested. A well conducted randomised controlled trial of a generic chronic disease self management programme in Shanghai demonstrates that the


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programme improves participants’ health behaviour, self efficacy and health status and reduces the number of hospitalisations six months after the training course. 42 In Singapore a framework and working model for CDM has been developed following the realisation that the US managed care bias of the literature on CDM could confuse Asian healthcare professionals.43

4.1.2i Effect on quality of care

More than 500 organisations in the US have implemented broad managed care programmes44 and the number continues to increase. A meta-analysis published in 2002 was designed to clarify the evidence on the efficacy of disease management programmes.Error: Reference source not found Evidence from 118 studies of 12 chronic conditions demonstrates the variegated picture of chronic disease management structure and mixed results of its measured efficacy for several conditions. It was found that depression and diabetes have been studied more than any other chronic condition and depression management programmes surpass diabetes and other chronic diseases in almost every aspect of measured outcomes (disease impact and efficacy; provider adherence and patient focussed intervention efficacy). One caveat to the evidence from the included depression studies is that some of the differences in outcomes could have resulted from the greater use (≥3) in the studies on depression of interventions [15/25 or 60%] than all other studies [29/118 or 25%].

A subsequent review of the literature found that programmes based on the CCM might improve patient and staff satisfaction, quality of care, and some clinical outcomes and reduce resource use. There was no evidence on which components of these programmes are the most effective.45 Similarly the review published by Singh et al.Error: Reference source not found found seven level 1 and level 2 studies that indicate that broad managed care programmes may improve the quality of care. However the evidence as to which components are the most important or transferable is inconclusive. The review by the WHO confirms these results about identification of important programme components, but did not find an effect on quality of life, mortality or cost effectiveness.46

There is a lack of controlled studies of the CCM, but controlled studies of interventions that incorporate one or more CCM elements do exist. The remit of an unpublished meta-analysis (Tsai email communication, 07/07/05) was to determine the extent to which CCM style interventions improve chronic illness care and also to establish whether any specific CCM elements are essential in improving outcomes. Twenty three published systematic reviews and meta-analyses supplemented with references from a chronic care bibliography held at the RAND organisation and Case Western Reserve Medical School were included. The conclusions from the evidence are that interventions that contained ≥ 1 CCM elements improve clinical outcomes and processes of care for the four chronic illnesses studied (asthma, diabetes, depression & heart failure). The specific CCM elements most responsible for the beneficial effects could not however be determined. One important limitation to the study is the unexplained heterogeneity in aggregating across conditions and types of interventions.

4.1.2ii Effect on clinical outcomes


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Few high quality studies assessing the impact of broad generic programmes on clinical outcomes could be identified and the majority of studies focus on diabetes or heart disease. Two reviews and four observational studies were identified that indicate that broad care management programmes may have some impact on clinical outcomes. The studies identified have relatively small samples or were sponsored by industry and are of the level 3 type.Error: Reference source not found There are however, randomised controlled trials of some specific components of the CCM such as self-management or patient education – see Section 4.3.2

4.1.2iii Effect on resource use

Overall the evidence on cost savings from broad disease management programmes is limited and many published studies have methodological problems. An important paper for the NHS was published by Feachem et al.47, the aim of which is to compare costs and performance of the NHS with the Kaiser Permanente system for delivering health care. The authors conclude that Kaiser achieves better performance at approximately the same cost as the NHS. In particular Kaiser’s use of acute hospital beds is suggested to be considerably lower than that of the NHS. The paper received a lot of criticism and a re-examination of the data and methods used was reported in 2004.48 The analyses reveal three main areas in which the paper’s methodology is flawed:

1. The patient populations served by KP and by the NHS are fundamentally different

2. Incorrect inflation of NHS costs

3. The use of non standardised data for NHS bed days

Interest remains however in the Kaiser system and many teams of healthcare professionals have been to the US to examine the system in situ. In 2005, a team from Wales went to Colorado and reported on their findings. The authors conclude that, despite the obvious differences between the Welsh context and what was observed in Colorado, there are important lessons to be learnt from the Kaiser approach. The Kaiser models of rehabilitation and intermediate care could be adopted in Wales and could form part of service development plans. The role of the pharmacist and the use of information and communications technology are clear in the Kaiser system and this should be emulated in Wales.49

A literature review concludes using evidence from 3 reviews of trial data, 2 RCTs and 2 cost analyses, that broad managed care programmes have the potential to reduce healthcare resource use and costs. Most of the evidence comes from the US but there is supporting evidence from other parts of the world.Error: Reference source notfound A report to the US Senate, based on a comprehensive review of the literature on disease management programmes for heart failure, diabetes and coronary artery disease found that there is insufficient evidence to conclude that such programmes reduce overall health spending. These results are confirmed by a review of 102 studies published between 1987 and 2001.50 However, another recently published review of 44 studies investigating return on investment for CDM programmes did find


18


evidence of a positive effect in programmes directed at chronic heart failure and multiple conditions.51

There is some evidence (level 2, 3 and 4) that broad managed care programmes tend to improve the quality of patient care and some clinical outcomes, although high quality evidence is currently scarce. Level 2, 3 and 4 evidence is available to support the tendency of broad managed care programmes to reduce the use of healthcare resources and costs.

4.1.3 INTEGRATION OF CARE

It is clear that effective forms of integrated or shared care (defined as collaborative working across primary and secondary care or sometimes used to refer to multidisciplinary working involving health specialists, social care and voluntary organisations in care processes) is very important for CDM. A recent literature review assessed the evidence about the following components of integrated care.Error: Reference source not found

Integrating primary and secondary care Multidisciplinary teams Nurse-led strategies in chronic care Chronic care clinics Community outreach programmes Integrated home care

Integrating primary and secondary care

An assessment of 72 disease management programmes in the US found that such programmes are more effective if they were firmly linked to primary care.52 Another review of evidence from 14 systematic reviews 29 RCTs and 9 level 3 or 4 studies that integrating primary and secondary care may improve certain outcomes, although UK studies tend not to support this.Error: Reference source not found High quality evidence (level 1 & 2) is inconsistent with regard to significant improvements in quality of care, but there did appear to be a trend towards improved quality of care. There is also some level 1 and 2 evidence that integration of care can improve healthcare resource use and reduce costs.

Multidisciplinary teams

Multidisciplinary teams (MDTs) are an important component of integrated care policies, but it is generally accepted that high quality evidence of their effect on outcomes is currently scarce.53 One literature review uses evidence from 14 systematic reviews, 33 RCTs and 6 level 3 or 4 studies and indicates that the evidence is inconsistent with regard to the effect of MDTs on patient outcomes. There is some level 1 & 2 evidence that patient satisfaction improvement and reduction of healthcare resource use may be produced by MDTs.Error: Reference source not found


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Nurse-led strategies in chronic care

There has been some research performed on expanding the role of nurses in chronic care. The most frequently described examples of this are the use of specialist nurses, the use of nurse-led clinics and nurse-led outpatient follow up. The evidence from 5 systematic reviews, 10 RCTs and two level 3 or 4 studies is inconsistent in terms of the effects of nurse-led strategies in chronic care.Error: Reference source not found One systematic review of the literature on nurse-led interventions for people with chronic conditions found that such interventions tend to be most effective for patients who are < 65years old, or older people where the intervention is tailored to their specific health problems.54

The majority of the evidence is of necessity disease specific and varies according to which disease was studied. In diabetes care for example a Cochrane review compares specialist nurse care with non-specialist nurse care and finds no significant differences in blood glucose levels, quality of life or emergency hospital admissions.55 However, the evidence from a RCT of specialist asthma nurses demonstrates a reduction in unscheduled visits to general practitioners.56

A review of the literature and trial evidence suggests that nurse-led clinics provide better quality of care compared with traditional physician led care.57 In Scotland, nurse-led clinics have been used successfully for the secondary prevention of coronary heart disease.58 A recently published systematic review of the effectiveness of nurse-led CDM for patients with chronic obstructive pulmonary disease concludes that there is little evidence to support the widespread implementation of nurse-led management interventions.59

Chronic care clinics

There are generally two types of care clinics for people with chronic conditions, either group visits to primary care for people with chronic conditions or clinics based in primary or specialist care that have multidisciplinary input. One literature review found insufficient evidence to conclude that group visits to GP practices are effective. The evidence from 3 systematic reviews, three RCTs and three level 3 and 4 studies is also inconclusive in terms of the effectiveness of specialist clinics. There is some evidence that chronic care clinics may reduce healthcare resource use.Error:Reference source not found

Community outreach programmes

Delivery of services in community centres is another way of integrating care or linking with community organisations or the voluntary sector. The evidence from 1 systematic review and 11 RCTs is inconclusive about the effectiveness of community outreach and collaboration with the voluntary sector.Error: Reference source notfound

Integrated home care

There has been considerable interest in the concept of ‘hospital at home’. Evidence from 9 systematic reviews, nine RCTs and three level 3 and 4 studies suggests that


20


integrated home care might reduce healthcare costs. There is insufficient evidence to draw conclusions about the effect on the quality of care.Error: Reference source notfound

The evidence that integrating primary and secondary care leads to improvement in the quality of care is currently inconclusive. Most studies performed in the UK do not confirm the US experience of improvement in some clinical outcomes. There is some evidence however that healthcare resource use and costs may be reduced. There is also evidence to support the fact that multidisciplinary teams tend to improve patient satisfaction and reduce healthcare costs, but the evidence on the effect on clinical outcomes is inconclusive. Providing care in the home can reduce healthcare costs but there is insufficient evidence to draw any conclusions about the effect on quality of care. There is insufficient evidence at this stage to advocate the use of nurse-led care, chronic care clinics and outreach care.

4.2 SYSTEMS OF CARE

A great deal of work has been performed using discrete CDM programmes and as well as these initiatives there are specific tools, systems and processes that have been tested in chronic care. This section summarises the evidence on:

Care pathwaysTargeting high risk peopleCase managementData systems for surveillance of ‘at risk’ patientSharing skills and knowledge

4.2.1 CARE PATHWAYS

Care pathways provide guidelines about how patients should progress through healthcare systems and the medications and services they should have access to. Most of the available evidence relates to specific conditions not generic care pathways. 4.2.1i. Effect on quality of care

There is a lack of high quality (level 1 & 2) evidence on improvement in the quality of care resulting from the use of care pathways. A randomised trial of integrated pathways for patients following stroke does not demonstrate any advantage over standard multidisciplinary care.60


There is little high quality evidence in terms of the effect of disease specific care pathways on clinical outcomes.Error: Reference source not found The two Cochrane


21


reviews on stroke care pathways and nursing care pathways found that the evidence is inconsistent.61 62


Two studies conducted in the US do not demonstrate a reduction in resource use or costs resulting from the use of care pathways.Error: Reference source not found

The evidence is inconsistent for the effectiveness of care pathways in CDM.

4.2.2 HIGH RISK PEOPLE – RISK STRATIFICATION

The importance of targeting people at high risk of using health care services is emphasised in the Kaiser approach, the CCM and in the Department of Health’s strategy on chronic conditions.

4.2.2i. Effect on quality of care

A King’s Fund assessment of five organisations running managed care programmes in the US found that four out of five organisations use risk stratification techniques to identify people at high risk and prioritised these people for intensive case management (nurse-led follow-up). The effect on the quality of care is not reported. Error: Reference source not found


Evidence from meta-analyses provides support for a positive effect on clinical outcomes in programmes that target high risk individuals; see for example Stuck et al.63 4.2.2iii Effect on resource use

There is level 1 and 2 evidence indicating that targeting high risk people might be a cost effective method for managing chronic conditions.Error: Reference source notfound Castlefields Health Centre in Cheshire is testing a case management approach targeting older people deemed high risk. The initial evaluation showed that there was a 15% reduction in admissions and 31% reduction in length of hospital stay.64

There is high quality evidence supporting the cost effectiveness of targeting high risk patients and a resulting improvement in clinical outcomes.

4.2.3 CASE MANAGEMENT

Case management (also known as care management) is a method for co-ordinating services for people with chronic conditions or complex social and medical needs. There are many different models of case management in chronic care and these differences make it very difficult to compare the research findings.


22



The evidence from 3 systematic reviews of the effect of case management programmes on the quality of care is inconsistent and further research is required in this area.Error: Reference source not found A review of the published literature by the King’s Fund examines the evidence base for case management in the context of the public service targets to reduce the use of emergency hospital beds and current interest in improving long-term care for older people with complex problems. Studies were identified from North America and Europe. Of the studies included, 14 are RCTs, 3 are non-randomised control trials and the remaining 2 are before-and-after studies. There is some evidence from 4 of the RCTs that functional status improves with case management, but in two of the studies this does not reach statistical significance and in the third study there are baseline differences. There is insufficient evidence to indicate the superiority of any particular model.65


There is a similar lack of consistency in the evidence regarding the effect on outcomes of case management. In the review by SinghError: Reference source not found the evidence from 1 systematic review, 1 meta-analysis and 4 RCTs shows a beneficial effect on outcomes. A lack of a positive effect is found in another systematic review and 4 RCTs. The latter systematic review does however, find that whilst overall there is not any good quality evidence to support a positive effect on outcomes, some data does indicate that case management may work best with older people, particularly immediately post hospitalisation.


There is a considerable amount of literature evaluating the effect of case management on resource use and cost effectiveness. Overall the evidence is inconsistent. There are many studies in mental health and the authors of a Cochrane review of case management in mental health care concludes that it is of questionable value.66 The latter review has been subject to criticism and another systematic review resulted in different conclusions67.

Evidence from a later review of case management as a method of reducing hospital bed use is inconclusive. The authors conclude that PCTs should be given flexibility to develop their own arrangements for improving the care of patients with chronic conditions taking into account existing local services and local need. Furthermore case management is unlikely to provide an ‘off-the-shelf’ solution to achieving the required reductions in emergency admissions.Error: Reference source not found

The evidence from good quality studies for the beneficial effects of case management on the quality of care, clinical outcomes and healthcare resource use is inconclusive.

4.2.4 DATA SYSTEMS FOR SURVEILLANCE OF PATIENTS WITH CHRONIC CONDITIONS


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Data gathering, evaluation and monitoring of the effective care and management of people with chronic conditions can be an important part of informing the work of policy makers, commissioners and service providers in improving the quality and effectiveness of care, clinical outcomes cost-effectiveness and value for money. Identifying such people whose health is deteriorating and thus require routine monitoring and data collection is of great importance. There are many tools that fulfil this purpose, such as those produced by ICIC in the US and by the National Primary and Care Trust Development Programme (NatPaCT)68 in the UK.

There is a considerable amount of evidence available on disease registries. A Cochrane review confirms that disease registries improve the care of patients with diabetes.69 As part of the NHS Modernisation Agency’s coronary heart disease programme, some GP practices are collaborating in evaluating the effectiveness of validated disease registries on the quality of care provided. Preliminary results indicate greater compliance with medication and reduction in blood pressure.70

A number of studies have been performed to assess monitoring strategies and tools. Evidence from seven RCTs and three level 3 and 4 studies is inconclusive about the effectiveness of routine monitoring and decision support systems in chronic care.Error: Reference source not found In September 2005 the Department of Health, in conjunction with the King’s Fund, published a predictive modelling risk tool to identify high-risk people. This tool will be subject to monitoring and evaluation..71

There are a number of ways of identifying patients who are likely to become high risk in the future. The threshold approach in which quantitative data e.g. >1 hospitalisation in the past year or the clinician ‘hunch’ have been found not to yield a high predictive accuracy Error: Reference source not found Error: Reference source not found .

There is evidence to support the use of disease registries for people with chronic conditions. There is little existing evidence to indicate the effectiveness of routine monitoring and decision support systems.

4.2.5 SHARING SKILLS AND KNOWLEDGE

Strategies for health professionals to share skills and knowledge are included in many broad chronic care programmes. There is high quality systematic review evidence that changing health professionals’ behaviour is difficult.72 Multifactor interventions that address different barriers to change simultaneously tend to be more successful than single initiatives. One review found that the literature about methods for health professionals to share knowledge and improve their skills for CDM concentrates on group educational sessions, individual one to one education, multidisciplinary training, reminders and audit and feedback. Evidence was found for the positive effect of group educational sessions. Audit and feedback are effective, but only when used as part of a broader strategy.Error: Reference source not found There is evidence that sharing skills and knowledge is an effective tool for improving the knowledge of health professionals. Most of the published evidence is in the area of group education.


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4.3 PATIENT SELF CARE INTERVENTIONS

The importance of involving patients in their care is now recognised internationally and the majority of strategic healthcare documents produced in the UK and elsewhere emphasise the patient’s role in the effective management and treatment of chronic conditions.

4.3.1 PATIENT INVOLVEMENT IN DECISION MAKING

A report from the King’s Fund illustrates that offering patients choices and involving them in decision making has cost implications73 The review by SinghError: Referencesource not found found that there is a considerable amount of high quality evidence indicating that empowering patients can help them take control of their care. There is as yet little conclusive evidence of the effect on clinical outcomes or resource use. Observational evidence indicates that a patient’s wish to be involved in their own care is linked both to age and race74 and levels of educational attainment. Those individuals with higher levels of educational achievements, and those with more than one chronic condition, typically want greater involvement in their care.75

There is little high-quality evidence to indicate which methods (patient held records, written encouragement, decision aids, GP training) promote effective patient involvement in decision making. A UK Health Technology assessment published in 2004, reviews evidence on ways of involving patients in research and decision-making. The authors conclude that appropriate skills, resources and time are required and the skills and attitudes of healthcare professionals are important factors in increasing patient involvement.76

The evidence points to the importance of the quality of the information provided but the provision of information alone does not necessarily affect a change77. Considerable research has been undertaken on the different ways of providing information to people with chronic conditions. The literature review of SinghError:Reference source not found identifies five methods for information provision:

written materials – improve people’s knowledge but are more effective when combined with other methods

group education sessions – good evidence of effectiveness for some conditions individual education sessions – the evidence is inconsistent lay educators – there is some good evidence that using lay people can be

effective new technologies e.g. internet, video, mass media interventions – the evidence

so far is inconsistent

There is evidence that involving patients in decisions about their care can improve the patient experience, but not all people are inclined to become involved with decision -making. There is as yet no conclusive evidence as to which method produces the most favourable outcomes. There is evidence that providing accessible information can affect patient wellbeing. The evidence indicates that the provision of written material alone does not have a measurable effect on quality of life or clinical


25


outcomes. There is good evidence to support the use of group educational sessions, although available evidence does not favour any one particular method. There is evidence supporting the use of lay educators.

4.3.2 SELF MANAGEMENT EDUCATION

The pioneering work on self-management programmes was performed in the US for patients with arthritis and culminated in the development at Stanford University Medical School of the Chronic Disease Self-management Course. Variations on this course have been developed throughout the world and there is high quality evidence that self-management education programmes can improve how patients feel about their disease and their coping ability.78 The UK government’s Expert Patient Programme (EPP) is based on the Stanford model and involves a self management course that is facilitated by lay people with chronic conditions. This programme is underpinned by the notion that patients with chronic conditions often understand their condition better than health professionals. The programme is currently being piloted in England in 144 primary care trusts (PCTs).79

In Wales a programme of lay-led generic self-management courses is being introduced based on the local health board (LHB) structure. An independent evaluation of the two pilot sites (Gwynedd & Swansea LHBs) indicates a successful comparison with English courses.80 The success is considered to be attributable to a combination of the active commitment by the LHB, the central support at a national level, an active EPP coordinator and the close involvement of the voluntary sector. A scoping report by the Cardiff Institute of Society Health and Ethics in 2005 reported on the feasibility of the development of a research network specialising in self-care being formed in Wales. The authors surveyed the research on self care being performed in Wales. The findings indicate that there are small pockets of activity in self-care that function independently in Wales and the authors conclude that a self care/Expert Patient research network is required to coordinate activity in this area. The report also contains useful information on the opinions of stakeholders such as the relevant voluntary organisations and health professionals.81

Not all self management programmes are based on the Stanford model and some programmes are disease specific. One literature review concludes that whilst there is a lack of high quality evidence on which type of self management programme is the most effective, it is generally concluded that such programmes can have a positive effect on patient satisfaction and feelings of control.Error: Reference source not found Another scoping review performed by the DH confirms this effectiveness but concludes that although a number of RCTs have been performed on a variety of chronic conditions, these have not as yet been incorporated into well conducted systematic reviews.82

Evidence about the benefits of self-management programmes appears to be consistent globally. A randomised trial reported from China found that self-management in people with hypertension is associated with improved awareness of the condition,


26


reduced risk factors, reduced visits to the general practitioner and improved health status.83

The King’s Fund has recently published a working paper, including a literature review, on how the NHS and other organisations can build on existing good practice and develop comprehensive strategies for self-management.84 The authors acknowledge that there is a great deal of work being performed through the EPP, but that this focuses on how patients need to change, rather than how services should develop to meet people’s needs and expectations.


A literature review published in 2002 finds that there is high quality evidence that self-management programmes can improve the quality of care.85


A comprehensive literature review reporting data from 71 trials on the self-management of people with chronic conditions was published in 2004.86 The authors conclude that self-management programmes do have a small to moderate effect on clinical outcomes for people with selected chronic conditions, but that some of this evidence is of poor quality. This conclusion is confirmed by the evidence review performed by Singh.Error: Reference source not found


There is evidence from small randomised trials performed in the UK that self-management programmes can result in the improved use of resources.Error:Reference source not found There is some evidence (level 2 & 3) that effective self-management can reduce the incidence of hospitalisation and accident and emergency attendances.87 88 One trial in 19 hospitals studied the effect of a whole systems approach to self-management for patients with Crohn’s disease or ulcerative colitis. After 1 year, the self-management group had recorded less secondary care contact, while primary care contact levels remained unchanged. The self-management group proved to be more cost effective than the control group who received standard care.89

An evaluation of self-management courses in the UK run by many different charitable organisations has however found no significant measurable effect on health service utilisation.90 In other parts of the world the evidence is also inconsistent.Error:Reference source not found

There is good quality evidence that self management programmes can result in a reduction in symptoms and GP and hospital visits. The evidence is inconclusive for the most successful type of programme and for the effect of such programmes on clinical outcomes and resource use.

4.3.3 SELF MONITORING AND TELEMEDICINE

People with chronic conditions often monitor their symptoms themselves so that the progress of their condition, changes to medication and the need to seek help from health professionals are assessed. Self monitoring has been extensively studied for


27


patients with diabetes, asthma and hypertension. There is some high quality evidence that self monitoring can improve clinical outcomes under certain conditions, but the evidence is not consistent. Existing evidence on health costs and resource use is also inconclusive.Error: Reference source not found

Electronic monitoring devices are often utilised in self-monitoring, although sometimes such monitoring may involve liaison between the patient and health care professionals and is therefore not strictly self monitoring. Methods that make use of telephone lines or the internet for information transfer are often referred to as telemedicine, telecare or telemonitoring. There is considerable interest worldwide in the use of telemedicine in a variety of health care situations. Most of the high quality evidence on the effectiveness of telemedicine came from studies of diabetic patients. The review by SinghError: Reference source not found concludes that computerised monitoring and telemedicine could potentially improve care processes and may be associated with improved clinical outcomes, particularly in diabetes. No conclusions could be made about their effect on healthcare resource use and costs or patient satisfaction. A literature review examined the use of interactive voice response systems in the diagnosis and management of chronic diseases. There is a paucity of evidence on their effectiveness, but the evidence that exists is suggestive of a positive effect on health status and behaviours.91

There is evidence that self monitoring can have a positive effect on clinical outcomes in the treatment of certain chronic conditions. There is insufficient evidence currently available to draw conclusions on the effect of self monitoring on healthcare resource use. Monitoring using computers and telecommunications can improve care processes and be associated with improved clinical outcomes for particular conditions. The evidence regarding the effect on resource use is inconclusive.


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5. SUMMARY AND CONCLUSIONS

A considerable amount of literature on CDM programmes and their elements have been identified and reviewed in this document. The majority of the published trials and reviews originated from the US, but a larger evidence base from the UK and other parts of the world is emerging that confirms the effectiveness of CDM programmes in improving the quality of care for people with chronic conditions. There is currently limited evidence on the transferability of some of the US models to the UK, although new trials and evaluations are being undertaken.

Most of the evaluated CDM programmes have been shown to improve the management and control of chronic conditions.

There is a lack of good quality, consistent evidence available about the impact of CDM programmes on outcomes. The data that does exist tends to be disease specific (chronic heart failure, diabetes, depression and asthma). There is no evidence at this stage of a direct link between CDM programmes and significant reductions in mortality. A possible explanation for the lack of measurable effect on mortality is the trial design being inadequate or the dilution effect of co-morbidities.

A summary of the levels of evidence for some systems and initiatives and their effectiveness is shown in the box below:

INDIVIDUAL SYSTEMS & INITIATIVES

LEVELS OF EVIDENCE1

EFFECTIVENESS2

Broad managed care programmes

2, 3 & 4 +

Integration of care 1, 2, 3 & 4 Inconsistent3

Care pathways 1 & 2 InconsistentTargeting high risk people 1 & 2 +Case management 1 & 2 InconclusiveData systems for surveillance of high risk people.

1, 2, 3 & 4

Level 1 & 2

Inconclusive for routine monitoring and decision support systems + for disease registries

Sharing skills and knowledge 2, 3 & 4 +Patient involvement in decision making

2, 3 & 4 +

Self management education 1, 2, 3, & 4 +Self monitoring and telemedicine

1 & 2 +4

1 See Appendix 7 for explanation of evidence grading system2 + = evidence positive for effectiveness 3 Most UK studies did not confirm the positive effect on outcomes of the US data. 4 Most of the evidence was disease specific


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The identified evidence does not allow the definitive identification of which components of the interventions are worthwhile or how various components may interact. The heterogeneity of the concept of disease management and its comparators is illustrated by the fact that the identified trials tend to report on the implementation of a unique programme consisting of various components. At present the evidence suggests that the most effective mix of components of a CDM programme will most likely depend on the target condition and on the underlying health care delivery situation.

The evidence on the cost effectiveness of CDM programmes is inconsistent

If one was designing a new programme or service for people with chronic conditions, the evidence would indicate that the key things that could be included are:

Broad managed care programmes Targeting high risk people Sharing skills and knowledge Patient involvement in decision making Self management education Self monitoring and telemedicine

This overview of the evidence on chronic disease management was subject to time-constraints. CDM is a very broad concept, including different content, forms of care and organisation and there is a need to develop a more rigorous concept of disease management to allow for more reliable synthesis and conclusions from evaluation studies. Another limitation is the heterogeneity of comparators and many of the reported studies compare disease management programmes with ‘standard’ or ‘usual’ care. What constitutes standard or usual care however will differ across and within health care systems. There is evidence that disease management programmes contribute to improvements in CDM and one would expect therefore that survival rates may also improve. There is however a lack of measurable effect on mortality in the published literature. This may be due to trial design or the confounding effect of comorbidities. Similarly there is no consistent evidence on outcomes such as user/carer satisfaction or discomfort as measured by activities of daily living. The review also does not seek to assess the evidence on data on the effects of socioeconomic deprivation, access and distance to service or ethnic minority population use. Such outcomes are important and should form the basis of future studies on CDM.


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6. REFERENCES


31


Appendix 1 THE CHRONIC CARE MODEL(AFTER WAGNER)

Downloaded from: http://www.improvingchroniccare.org/change/model/components.html#citation

Accessed 17/08/05, with permission to copy from http://www . acponline.org

Appendix 2 KEY CHARACTERISTICS OF THE KAISER, EVERCARE &


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http://www/

http://www.improvingchroniccare.org/change/model/components.html#citation

http://qhc.bmjjournals.com/content/vol13/issue4/images/large/qc10744.f1.jpeg


PFIZER APPROACH TO MANAGED CARE*

Overall essenceKaiser approachUses a wide mix of strategies to target the whole care continuum, focussing on integrated services

Evercare approachUses specialised nurses to individually support those people at highest risk of admission

Pfizer approachUses telephone system to monitor and refer people at highest risk

Approach based on CCM Approaches based on targeting high risk peopleKey principles Unplanned

hospital use is an indicator of system failure

Align care to the needs of the client

Individualised whole person approach

Care provided in least invasive manner in the least intensive setting

Decisions based on

Proactive contact with patients at highest risk to assess, refer, educate and monitor

Supplement to existing services ( not

* Modified from Singh 200520 1 Innovative Care for Chronic Conditions. Building Blocks for Action, WHO, 20022 Department of Health. Improving chronic disease management. London: DH;20043 National Public Health Service for Wales. A profile of long-term and chronic

conditions in Wales. Cardiff: NPHS; 20054 Royal College Physicians, Royal College General Practitioners; NHS alliance. Clinicians, services and commissioning in chronic disease management in the NHS. RCP/RGP/NHS alliance 20045 Wagner EH. Chronic disease management: what will it take to improve care for chronic illness? Effective Clin Pract 1998; 1: 2-4 6 National Assembly for Wales. Welsh Health Survey October2003-March2004 provisional results. 7 Wilson T; Buck D; Ham C. Rising to the challenge: will the NHS support people with long term conditions? BMJ 2005; 330:657-6618 Seddon ME; Marshall MN; Campbell SM et al. Systematic review of studies of quality of clinical care in general practice in the UK, Australia and New Zealand. Qual Health Care 2001; 10:152-1589 Department of Health. Supporting people with long-term conditions: an NHS and Social Care model to support local innovation and integration. London: DH, 200510 Welsh Assembly Government Designed for Life. WAG May 200511 King’s Fund. Wanless Social Care Review. London King’s Fund 2005 12 Oates K. Chronic Disease Management. Scottish Health on the Web 2005. Available at: http://www.show.scot.nhs.uk/nhshighland/About%20Us/Meetings/Board/20050607/2%20Board%20050405%20Min.pdf. Accessed 10/08/05 13 Department of Health. Chronic disease management: a compendium of information. London: DH, 200414 Battersby MW and the SA HealthPlus Team. Health reform through coordinated care: SA HealthPlus. BMJ 2005; 330:662-665 15 Sackett DL; Richardson WS; Rosenberg W et al. Evidence based medicine: how to practice and teach EBM. Edinburgh: Churchill Livingstone 199516 Weingarten SR; Henning JM; Badangarw E et al. Interventions used in disease management programmes for patients with chronic illness – which ones work? Meta-analysis of published reports. BMJ 2002; 325: 925-92817 National Institute for Clinical Excellence. Guideline development methods. Available at: http://www.nice.org.uk. Accessed 07/07/0518 Linden A, Roberts N. A user's guide to the disease management literature: recommendations for reporting and assessing program outcomes. Am J Manag Care 2005; 11: 81-90.


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Patients are ‘partners’ and ‘providers’ in care

Information is essential

Improvement occurs through commitment and shared vision, not through coercion

data and population evaluation

Avoid adverse effects of medications and poly-pharmacy

substitute) Encourage self-

treatment and behaviour modification

Key strategies

Education

Patient education, including using the internet and during hospital stay

Focussed education and follow up mentoring

Self-care promotion

Patient education through telephone support

19 Cretin S; Shortell SM; Keeler EB. An evaluation of collaborative interventions to improve chronic illness care framework and study design. Eval Rev 2004;28: 28-5120 Singh D. Transforming Chronic Care Evidence about improving care for people with long-term conditions. HSMC University of Birmingham 2005 23 Dixon, J; Lewis R; Rosen R et al. Managing chronic disease: what can we learn from the US experience? London: King’s Fund, 200424 Department of Health. NHS Modernisation Agency; Matrix Research and Consultancy. Learning distillation of chronic disease management programmes in the UK. London: DH, 200425 Boaden R; Dusheiko M; Gravelle H et al. Evercare evaluation interim report: implications for supporting people with long-term conditions. National Primary Care Research and Development Centre 2005 35 Busse R. Disease management programs in Germany’s statutory health insurance system. Health Affairs 2004; 23: 56-6736Mur-Veeman I; Hardy B; Steenbergen M et al. Development of integrated care in England and the Netherlands. Managing across public-private boundaries. Health Policy 2003; 65: 227-41. 37 Shepperd S; Iliffe S. Hospital at home versus in-patient hospital care. (Cochrane review). In The Cochrane Library, Issue 3, 2005. Chichester UK: John Wiley & Sons38 Temmink D; Hutten JB; Francke AL et al. Rheumatology out-patient nurse clinics: a valuable addition? Arthritis Rheum 2001; 45:280-28639 Ministry of Health services. Chronic Disease Management. Available at: http://www.healthservices.gov.bc.ca/cdm. Accessed 01/08/0541 Ministry of Health 2004. Care Plus an Overview. Wellington: Ministry of Health. Available at: http://www.moh.govt.nz/moh.nsf/wpg_Index/Publications-Care+Plus+an++Overview. Accessed 23/08/0542 Dongbo F; Hua F; McGowan P et al. Implementation and quantitative evaluation of chronic disease self management programme in Shanghai, China: randomized controlled trial. Bull. WHO 2003; 81:174-18243 Cheah J. Chronic disease management: a Singapore perspective. BMJ 2001; 323: 990-99347 Feachem, R; Sekhri N; White K. Getting more for their dollar: a comparison of the NHS with California’s Kaiser Permanente. BMJ 2002; 324: 135-14348 Talbot-Smith A; Gnani S; Pollock A et al. Questioning the claims from Kaiser. Brit. J Gen Pract 2004; 54:415-42149 The Welsh NHS Confederation. From the Rockies to the Rhondda. Available at: www.welshconfed.org/Health2015/ FromtheRockiestotheRhondda.html. Accessed 16/08/05


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Target

Care planning

Whole spectrum of chronic care

Includes targeted risk assessment

Identifying people at high risk using ‘Hospital Analysis Tool’

Identifying people at high risk

Proactive management Developing integrated

care pathways to reduce inappropriate referrals

Proactive management of people at high risk

Individualised care plan

Medicines management for co-morbidities

Case finding Patient assessment Proactive management

of people at high risk

55 Loveman E; Royle P; Waugh N. Specialist nurses in diabetes mellitus ( Cochrane review). In The Cochrane Library, Issue 3, 2005. Chichester UK: John Wiley & Sons56 Griffiths C; Foster G; Barnes N et al. Specialist nurse intervention to reduce unscheduled asthma care in a deprived multiethnic area: the east London randomised controlled trial for high risk asthma (ELECTRA). BMJ 2004; 328: 144-149 57 Vrijhoef HJ; Diedriks JP; Spreeuwenberg C. Effects on quality of care for patients with NIDDM or COPD when the specialised nurse has a central role: a literature review. Patient Educ Couns 2000; 41: 243-25058 Murchie P; Campbell NC; Ritchie LD et al. Secondary prevention clinics for coronary heart disease: four year follow up of a randomised controlled trial in primary care. BMJ 2003; 326 : 84 -8959 Taylor SJC; Candy B; Bryar RM et al. Effectiveness of innovations in nurse led chronic disease management for patients with chronic obstructive pulmonary disease: systematic review of evidence. BMJ 2005; 385; 331: 60 Sulch D; Perez I; Melbourn A et al. Randomized controlled trial of integrated ( managed) care pathway for stroke rehabilitation. Stroke 2000; 31: 1929-193461 Kwan J; Sandercock P. In-hospital care pathways for stroke (Cochrane Review). In The Cochrane Library, Issue 3, 2005. Chichester UK: John Wiley & Sons62 Thomas L; Cullum N; McColl E et al. Guidelines in professions allied to medicine ( Cochrane Review). In The Cochrane Library, Issue 3, 2005. Chichester UK: John Wiley & Sons63 Stuck AE; Siu AL. Comprehensive geriatric assessment: a meta-analysis of controlled trials. Lancet 1993; 342: 1032-103666 Marshall M; Gray A; Lockwood A et al. Case management for people with severe mental disorders ( Cochrane Review) In The Cochrane Library, Issue 3, 2005. Chichester UK: John Wiley & Sons67 Ziguras SJ; Stuart GW; Jackson AC. Assessing the evidence on case management. Br. J. Psych. 2002; 181: 17-2168 National Primary and Care Trust Development Programme. Available at: http://www.natpact.nhs.uk/uploads/cdm_matrix_selfassessment Accessed 06/09/0569 Renders CM; Valk GD; Griffin S et al. Interventions to improve the management of diabetes mellitus in primary care, outpatient and community settings ( Cochrane Review) In The Cochrane Library, Issue 3, 2005. Chichester UK: John Wiley & Sons70 Available at: http://www.modernnhs.nhs.uk. Accessed 08/08/05 76 Oliver S; Clarke-Jones L; Rees R et al. Involving consumers in research and development agenda setting for the NHS: developing an evidence-based approach. Health Technol Assess 2004; 8: 1-148


35

http://www.modernnhs.nhs.uk/


Staff

Tools

Developing partnerships between clinicians and managers

High proportion of doctors in leadership roles

GPs in A & E; consultants in GP clinics; dedicated MD rounds

Case management by specialised nurses( Advanced Primary Nurses)

Extended GP role through partnership with nurses

Dedicated telephone support staff (nurses)

Information systems such as reminders on patient notes and monitoring systems

Clinical evidence database

IT risk assessment Share data and patient

information across system to improve care

Software for telephone case management incorporating national and local guidelines

78 The British Liver Trust. Living a Healthy Life with Long Term Illness. Leland Stanford Junior University, 1999. cited in reference 81 79 Department of Health. The Expert Patient. Available at: http://www.dh.gov.uk/assetRoot/04/10/27/61/04102761.pdf. Accessed 14/08/05 80 Borland J. An independent evaluation of the process of embedding the Expert Patients Programme (EPP) in Swansea and Gwynedd Local Health Boards. 2004. Cited by Shaw et al 83

81 Shaw C; Faulkner A; Holm S et al. Self care and the Expert Patient research network scooping report. Available at: http://www.word.wales.gov.uk/content/networks/selfcare-e.pdf. Accessed 07/09/05 83 Yu Pl; Ye W; Liu XR et al. Evaluation on the effectiveness for self management of hypertensive patients in a community. Zhongua Liu Xing Xue Za Zhi 2003; 24: 790-793. Abstract only.84 Corben S; Rosen R. Self-management for long-term conditions. King’s Fund 2005. Available at : http:// www.kingsfund.org/publications. Accessed 05/07/0585 Bodenheimer T; Lorig K; Holman H et al. Patient self-management of chronic disease in primary care. JAMA 2002; 288: 2469-247521 Epping-Jordan, JE., Pruitt SD; Bengoa R et al. Improving the quality of health care for chronic conditions. Quality and Safety in Health Care 2004; 13 (4): 299-30522 Bibby J; Reinertsen JL. NHS Modernisation Agency. UK Pursuing Perfection Progamme. Leading for Improvement. Available at: http://www.modern.nhs.uk/home/default.asp?site_id=40&id=9510. Accessed 19/08/05 26 McKee M; Nolte E. Responding to the challenge of chronic diseases: ideas from Europe. Clinical Medicine 2004; 4: 336-342 27 Lang T; Liberati A; Tampieri A et al. A European version of the Appropriateness Evaluation Protocol. Goals and presentation. The BIOMED 1 Group on Appropriateness of Hospital Use. Int J Technol Assess Health Care 1999; 15: 185-197 28 Ribbe MW; Ljunggren G; Steel K et al. Nursing homes in 10 nations: a comparison between countries and settings. Age Ageing 1997; 26: 3-12 29 Stuart M; Weinrich M. Integrated health system for chronic disease management: lessons learned from France. Chest 2004; 125: 695-703 30 Scalvini S; Volterrani M; Giordano A et al. Boario Home Care Project: an Italian telemedicine experience. Monaldi Arch Chest Dis 2003; 60:254-25731 Frohlich A; Jorgensen J. Improving care in patients with chronic conditions. Available at: http://www.integratedcarenetwork.org/publish/articles/000045/article.htm. Accessed 27/07/05


36


Discharge

Online discharge summaries

Dedicated discharge planners ( 1per25 patients)

Single point of contact to help access services

Examples This model is being formally tested in nine PCTs in England

This model is being formally tested in nine PCTs in England

This model is being formally tested by one PCT in England.

Appendix 3 PYRAMID OF CARE (adapted from Kaiser)

32 Stuart M; Weinrich M. Home and community based long-term care: lessons from Denmark. Gerontologist 2001; 41: 474-480 33 Corrigan JM; Greiner A; Erickson SM eds. Fostering rapid advances in health care: learning from system demonstrations: Institute of Medicine. Available at: http://www.nap.edu/catalog/10565.html. Accessed 20/07/05 34 Bosch X. Spain’s home healthcare programme goes nationwide. BMJ 2000; 320:53540 Macq J. Commentary: trials should inform structures and processes needed for tailoring interventions. BMJ 2005; 330: 665-666 44 National Coalition on Health Care, Institute for Health Improvement. Curing the System. Available at: www.improvingchroniccare.org.ACT_report_May_2002_Curing_The_System.pdf. Accessed 22/08/0545 Bodenheimer T. Interventions to improve chronic illness care: evaluating their effectiveness. Dis Manag 2003; 6: 63-7146 World Health Organization. Are disease management programmes (DMPs) effective in improving quality of care for people with chronic conditions? WHO Regional Office for Europe’s Health Evidence Network (HEN) 200350 Ofman JJ, Badamgarav E, Henning JM, et al. Does disease management improve clinical and economic outcomes in patients with chronic diseases? A systematic review. American Journal of Medicine 2004; 117: 182-19251 Goetzel RZ; Ozminkowski RJ; Villagra VG et al. Return on Investment in disease management: A review. Hlth Care Financ Rev 2005; 26:1-1952 Wagner EH; Davis C; Schaefer J et al. A survey of leading chronic disease management programs: are they consistent with the literature? Manag Care Q 1999; 7: 56-6653 National Institute for Clinical Excellence. Improving Outcomes for Children and Young People with Cancer. Available at http://www.nice.org.uk. Accessed 22/08/07 54 Frich LM. Nursing interventions for patients with chronic conditions. J Adv Nurs 2003; 44: 137-15364 Castlefields Health Centre: Chronic Disease management. Available at: http://www.natpact.nhs.uk/uploads/Castlefields%20Report.doc. Accessed 02/08/0565 Hutt R; Rosen R; McCauley J. Case managing long-term conditions. King’s Fund 2004.71 King’s Fund. Available at: http://www.kingsfund.org.uk/health_topics/predictive_risk.html. Accessed 03/09/0572 Oxman AD; Thomson MA; Davis DA et al. No magic bullets: a systematic review of 102 trials of interventions to improve professional practice. CMAJ 1995; 153:


37


1423-143173 Appleby J; Harrison A; Devlin N. What is the Real Cost of More Patient Choice? London: Kings Fund, 2003 74 Sciegaj M; Capitman JA; Kyriacou CK. Consumer directed community care: race/ethnicity and individual differences in preferences for control. Gerontologist 2004; 44: 489-49975 Funk LM. Who wants to be involved? Decision making preferences among residents of long-term care facilities. Can J Aging 2004; 23: 47-5877 Hibbard JH; Peters E. Supporting informed consumer health care decisions: data presentation approaches that facilitate the use of information in choice. Ann Rev Public Health 2003; 24: 413-43382 Department of Health. Research evidence on the usefulness of self care support networks for care of people with minor ailments, acute illness and long-term conditions and those taking initiatives to stay healthy. DH 2004. Available at: http://www.dh.gov.uk/PublicationsAndStatistics/Publications/PublicationsPolicyAndGuidance/PublicationsPolicyAndGuidanceArticle/fs/en?CONTENT_ID=4114867&chk=dB6WfN. Accessed 23/08/0586 Warsi A; Wang PS; LaValley MP et al. Self-management education programs in chronic disease: a systematic review and methodological critique of the literature. Arch Intern Med 2004; 164: 1641-164987 Gibson PG; Powell H; Coughlan J et al. Self management education and regular practitioner review for adults with asthma. In The Cochrane Library. Issue 3, 2005. Chichester UK: John Wiley & Sons88 Newman S; Steed L; Mulligan K. Self management interventions for chronic illness. Lancet 2004; 364: 1523-1537 89 Kennedy A; Nelson E; Reeves D et al. A randomised controlled trial to assess the impact of a package comprising a patient-orientated, evidence based self-help guidebook and patient-centred consultations on disease management and satisfaction in inflammatory bowel disease. Health Technology Assess 2003; 7: 1-11390 Wright CC; Barlow JH; Turner AP et al. Self-management training for people with chronic disease: An exploratory study. Br. J. Hlth. Psychol 2003; 8:465-476 91 Piette JD. Interactive voice response systems in the diagnosis and management of chronic disease. Am J Manag Care 2000; 6: 817-827


38


Modified from: http://www.natpact.nhs.uk/uploads/Pyramid%20-%20Chronic%20Disease%20Management.pdf . Accessed 20/08/05


39

http://www.natpact.nhs.uk/uploads/Pyramid%20-%20Chronic%20Disease%20Management.pdf

http://www.natpact.nhs.uk/uploads/Pyramid%20-%20Chronic%20Disease%20Management.pdf


Appendix 4 INITIAL SCOPING SEARCH

Title of SearchChronic disease management/Long term conditionsFor : NPHS Health Services and Quality and Development Team

Temple of Peace

By: Isabel Puscas, LKMS SE region

Temple of Peace

Date : 18th May 2005Updated 18th August (item italicised)Search QuestionScoping summary of main UK policy/guidance and supporting documents; review of existing models of care and localised interventions and evaluations; international models of care and relevant background information. Excluded – disease specific models/programmes of careKey Words -thesaurus/free text/MeSH

Chronic disease management; long term conditions; long term treatment; multifaceted chronic disease management; multiple chronic disease$; care models; chronic care model; disease management program$; case management; patient centered care; comprehensive care co-ordination; comprehensive healthcare; care managed processes; care networks/pathways;

Publication types –guidelines, systematic reviews, press releasesconference proceedings, published statistics etc

Policy and guidance documents; research and evaluative material; reports; articles; authorative websites

Limitations Language English only Dates covered 1996 to date Non UK Global Other limitations -

Sources of InformationEvidence Based Resources including Cochrane , Clinical Evidence & guidelines

Cochrane - hits only for disease specific therefore search results not included

Public Health & Health Management and Knowledge bases (HMIC , NPHS Library catalogues

Health Management Information Consortium (HMIC)


40


Clinical Databases (Medline, Embase, CINAHL)

MedlineBNI, CINAHL –disease specific, search results therefore not included

Specialist DatabasesGrey Literature Sources (SIGLE, HMIC) Specific Databases (Dissertation AbstractsNRR Research Registers & ASSIA, CRD

National Research Register, DoH Research Findings Electronic Register (ReFeR);

Internet –health gateways -OMNI

OMNI

Specialised Collections relevant to topic. (Royal Colleges, Professional Associations)

UK Health DepartmentsDH

Affiliated organisations - HPA, HP,Wider NHS - NeLH, PHOs, HDA King's Fund; National Centre for

Primary Care Development, NLH, University of York CRD;

Non NHS - LAs, academiaEuropean/International authoritative sources - EU, WHO

WHO, European Observatory on Health Systems and Policies

Expert OpinionFrequently cited authors within specialist field, Colleagues,E - bulletin boards (project work details


41


Appendix 5 MAIN SEARCH STRATEGY

Modified from Weingarten 2002

The facility available on the HOWIS website to search simultaneously across multiple databases was used. Ovid Medline, Embase, Cochrane Database of Systematic Reviews, ACP Journal Club EBM reviews; Database of Abstracts of Reviews of Effects; Cochrane Central Register of Controlled Trials; British Nursing Index and Cinahl, were searched.

Relevant studies were identified using the search strategy shown below:

1 patient care planning/

2 patient care team/

3 primary nursing care/

4 case management/

5 critical pathways/

6 primary health care/

7 continuity of patient care/

8 guidelines/

9 practice guidelines/

10 disease management.tw.

11 disease management/

12 disease state management.tw.

13 comprehensive health care/

14 ambulatory care/

15 or/1-14

16 case control studies/

17 retrospective studies/

18 cohort studies/


42


19 longitudinal studies/

20 follow-up studies/

21 prospective studies/

22 cross-sectional studies/

23 crossover studies/

24 clinical protocols/

25 clinical trials/

26 multicenter studies/

27 randomized controlled trials/

28 feasibility studies/

29 intervention studies/

30 pilot projects/

31 sampling studies/

32 double blind method/

33 matched pair analysis/

34 random allocation/

35 reproducibility of results/

36 controlled clinical trials/

37 sample size/

38 single-blind method/

39 random$.tw.

40 or/16-39

41 exp economics/

42 ec.fs.

43 41 or 42


43


44 controlled clinical trial.pt.

45 clinical trial.pt.

46 multicenter study.pt.

47 randomized controlled trial.pt.

48 or/44-47

49 40 or 43 or 48

50 15 and 49

51 limit 50 to human

52 limit 51 to english language

53 52 not letter.pt.

54 53 not editorial.pt.

55 54 not review.pt.

56 55 not news.pt.

57 child$.ti.

58 56 not 57

59 pediatric$.ti.

60 58 not 59

61 adolescen$.ti.

62 60 not 61

63 youth.ti.

64 62 not 63

65 infant$.ti.

66 64 not 65

67 neonate$.ti.

68 66 not 67


44


69 limit 68 to animal/

70 68 not 69

71 limit 70 to dental journals

72 70 not 71

73 interview.pt.

74 72 not 73

75 limit 74 to yr=2002 -2005


45


Appendix 6 HIGH LEVEL SEARCH STRATEGY

The following sites were searched using the major search terms used in the search strategies in Appendices 5& 6

Agency for Healthcare Research and Quality Chronic Care(AHRQ)Appraisal of Guidelines for Research & Evaluation (AGREE) CollaborationAltaVistaAudit CommissionAgency for Quality in Medicine (AZQ)Australia Sharing Health Care InititiativeBritish Columbia’s Chronic Disease ManagementCalgary Healthcare Region Chronic Disease ManagementCanadian Coordinating Office for Health Technology Assessment (CCOHTA)Centre for Health Services Research - Population and Health Sciences - University of NewcastleCentre for Reviews DisseminationCommission for Health ImprovementDepartment of Health – Disease managementEffective Professional Practice InitiativeEffective Practice & Organisation of Care Group Evidence Network - The UK Centre for Evidence Based PolicyGuidelines International NetworkGoogleGoogle scholarHealth Care Policy Research Development UnitHealth Development AgencyHealth Evidence Bulletin WalesHealth Management Information ConsortiumHealth of Wales Information ServiceHealth Technology Assessment ProgrammeImproving Chronic Illness Care (ICIC)Kings FundNatPaCT Programme (site now archived to www.networks.nhs.uk)National Assembly for WalesNational Electronic Library for Health ( NeLH) – Disease managementNational Guideline ClearinghouseNational Electronic Library for Public HealthNational Health and Medical Research CouncilNational Horizon Scanning CentreNational Institute for Clinical ExcellenceNational Public Health Service for WalesNHS Centre for Reviews and DisseminationNHS Modernisation AgencyOrganising Medical Networked InformationPublic Health KnowledgeScottish Intercollegiate Guidelines Network (SIGN)SUMSearchTrent Research Information Access GatewayTurning Research Into Practice (TRIP) Database


46


University of Leicester Info Injection Long Term ConditionsUpToDateWorld Health Organisation


47


Appendix 7 EVIDENCE LEVELS AND QUALITY GRADING (modified from NICE Guideline Methodology Manual)

Level of Evidence Type of evidence

1++ High-quality meta-analyses, systematic reviews of RCTs, orRCTs with a very low risk of bias

1+ Well-conducted meta-analyses, systematic reviews of RCTs,or RCTs with a low risk of bias

1- Meta-analyses, systematic reviews of RCTs, or RCTs with a high risk of bias*

2++ High-quality systematic reviews of case–control or cohort studies. High-quality case–control or cohort studies with a very low risk of confounding, bias, or chance and a high probability that the relationship is causal

2+ Well-conducted case–control or cohort studies with a low risk of confounding, bias, or chance and a moderate probability that the relationship is causal

2- Case–control or cohort studies with a high risk of confounding bias, or chance and a significant risk that the relationship is not causal*

3 Non-analytic studies (for example, case reports, case series)

4 Expert opinion, formal consensus

Quality grading

++ = good quality+ = fair+/- = fair to poor - = poor


48


Appendix 8 THE INNOVATIVE CARE FOR CHRONIC CONDITIONS (ICCC) FRAMEWORK

Downloaded from: http://www.who.int/chronic_conditions/framework/en/. Accessed 17/08/05


49

http://www.who.int/chronic_conditions/framework/en/

http://qhc.bmjjournals.com/content/vol13/issue4/images/large/qc10744.f2.jpeg


Appendix 9 EVIDENCE TABLE CHRONIC DISEASE MANAGEMENT

STUDY POPULATION/SETTING

INTERVENTION/AIM

OUTCOMES RESULTS COMMENTSItalics= reviewers comments

DESIGN EVIDENCE LEVEL/QUALITY

1. Innovative Care for Chronic Conditions. Building Blocks for Action, WHO, 2002

People with chronic diseases

Global

Review of models in use world wide for chronic disease management

- The document presents a new framework for health care systems to improve care for chronic conditions. The framework is composed of components within the patient, health care organisation and the community and policy levels. These components are described as building blocks that can be used to make a service more effective for CDM

Useful background document with many examples of CDM programmes in use globally .

Expert review/opinion

4

+

2. Department of Health. Improving chronic disease management. London: DH;2004


UK

Description of the current position of CDM in England and is aimed at PCT, NHS trust and SHA management teams

- The authors conclude that there is considerable work being performed at the local and national level.

Expert opinion

4

+

3. National Public Health Service for Wales. A profile of long-term and chronic conditions in Wales. Cardiff: NPHS; 2005

Epidemiology of LTCs in Wales

UK

Description of the prevalence of chronic diseases and demographic trends.

- One third of adults in Wales (an estimated 800, 000 adults) reported having at least one chronic condition. The most commonly treated chronic disease was

Gives up to date information about the scale of the problem in Wales

Expert review/opinion

4


50



INTERVENTION/AIM



arthritis, followed by respiratory conditions and chronic heart conditions. Intensive users of inpatient services had on average three chronic problems. It was estimated that by 2014 there will be a 12% increase in the number of adults with at least 1 chronic disease.

+

4. Royal College Physicians, Royal College General Practitioners; NHS alliance. Clinicians, services and commissioning in chronic disease management in the NHS. RCP/RGP/NHS alliance 2004


UK

Description of how the joint re-engagement of primary and secondary care clinicians in the commissioning process is fundamental to making progress in CDM

- The joint working party makes several recommendations that are divided into those for clinical involvement, clinical governance and system change and service redesign.

Useful for how primary and secondary care should work to improve the coordination of CDM programmes

Expert opinion

4

+

5. Wagner EH. Chronic disease management: what will it take to improve care for chronic illness? Effective Clin. Pract. 1998; 1: 2-4 Available at :


US

Description of what is required to improve CDM

- The author concludes that the evidence strongly suggests that it is necessary to reshape ambulatory care to improve CDM

Expert opinion

4

+/-


51



INTERVENTION/AIM



http://www.acponline.org/journals/ecp/augsep98/cdm.htm. Accessed 15/08/05 6. National Assembly for Wales. Welsh Health Survey October2003-March2004 provisional results. NAfW 2005

Population of Wales

- Provides most recent figures for prevalence of chronic conditions in Wales

Survey 4

+

7. Wilson T; Buck D; Ham C. Rising to the challenge: will the NHS support people with long term conditions? BMJ 2005; 330:657-661


UK

- - The authors conclude that programmes already in place, especially case management with community matrons are supporting people with chronic diseases. Careful monitoring is required of the effectiveness of CDM initiatives

Expert opinion

4

+

8. Seddon ME; Marshall MN; Campbell SM et al. Systematic review of studies of quality of clinical care in general practice in the UK, Australia and New Zealand. Qual. Health Care 2001; 10:152-

General practice based care

UK, Australia, New Zealand

Summary of evaluations of the quality of care provided in general practice

- 90 papers fulfilled inclusion criteria. Most papers came from the UK. In almost all the studies reviewed, the quality of care did not attain acceptable standards of practice.

Adequately described methodology. Many of the published papers lack scientific rigour. Review period finished in 1999, so some information is

Systematic review

2++

+


52

http://www.acponline.org/journals/ecp/augsep98/cdm.htm





INTERVENTION/AIM



158 dated.9. Department of Health. Supporting people with long term conditions: an NHS and Social Care model to support local innovation and integration. London: DH, 2005


UK

Development of NHS and social care model to support people with chronic diseases

- The practical management of this model is based on the Kaiser pyramid of care approach. Level 3: Case management Level 2: Disease-specific care managementLevel 1: Supported self careThe key aspects of the model are:-: Identify all long

term condition patients.

Stratify the patients to match care to different needs of patients

Focus initially on the very high intensive users of secondary care services through a case management approach.

Appoint community matrons.

Develop a system of identifying prospective very high intensity users of services.

Establish multi-

Useful document that has been well researched and takes into account available evidence for CDM

Strategic document /Expert Opinion

4

++


53



INTERVENTION/AIM



professional teams based in primary or community care with support of specialist advice to manage care across all settings.

Develop a local strategy to support comprehensive self care.

Implement the Expert Patient Programme and other self care programmes.

Take a systematic approach that links health, social care, patients and carers.

Use the tools and techniques already available to start to make an impact.

10. Welsh Assembly Government Designed for Life. WAG May 2005

Population of Wales

Strategy for improving health service in Wales

- Strategic document/

Expert opinion

4

++

11. King’s Fund. Wanless Social Care Review. London

Older people Assessment of the future need for health and social

- At present the most important reasons for social care service use are

Good summary of the evidence on how social

Expert opinion

4


54



INTERVENTION/AIM



King’s Fund 2005 UK care of the elderly with chronic conditions

as follows, listed in order of importance

Health problems , functional disability, ADL problems, a need for rehabilitation and similar

A lack of, or break-down in, informal care, or stress on carers

Poor housing and environment

Social reasons such as loneliness, fear of crime and abuse.

It is possible to project how these factors will change in the future on the basis of current trends.

care can reduce, prevent or substitute for, the need for hospital services

++

12. Oates K. Chronic Disease Management Scottish Health on the Web 2005


Scotland

Development of a CDM strategy

- The author concludes that the recent changes in the GP and consultant contracts and the way NHS Highland is organised has gone some way to addressing issues

Useful to see approach for CDM in Scotland

Expert opinion

4

+/-


55



INTERVENTION/AIM



about CDM. The present culture however, does not recognise chronic disease as a key driver for change and fails to try and assess the best models for CDM.

13. Department of Health. Chronic disease management: a compendium of information. London: DH, 2004


UK

Compilation of evidence about chronic disease.

- The authors conclude: Chronic disease is an

important health issue, and is growing in importance

Your social circumstances affect the chance of you having a chronic disease greatly

Some patients have multiple chronic diseases, which make their care particularly complex

A small number of patients and diseases account for a disproportionate amount of health care use (especially hospital care)

There is evidence that chronic disease can be better managed

- Expert review/Evid

ence summary

4

+


56



INTERVENTION/AIM



through: Increased support

for self care Strengthening usual

primary care Offering responsive

specialist care Managing

vulnerable cases by anticipating their needs

This approach is enshrined in the Chronic Care Model, the adoption of which has clear implications for the NHS

14.Battersby MW and the SA HealthPlus Team. Health reform through coordinated care: SA HealthPlus. BMJ 2005; 330:662-665


Australia

A trial of the SA HealthPlus CDM programme

Quality of life ( SF-36)

and resource use.

Qualitative data from surveys,

focus groups & interviews

Barriers to CDM in Australia include multiple funding sources and a general practice that is focussed on acute care. The SAHealthPlus trial revealed improved outcomes for patients, but resource use was not significantly reduced. The SA trials identified self management as important.

Design problems with trial – see commentary by Macq40

Non randomised

trial.

2-

+

15. Sackett DL; Richardson WS; Rosenberg W et al

Evidence based medicine

Description of methods for EBM

- Gives basics of the EBM approach with PICO methodology

- Expert opinion

4


57



INTERVENTION/AIM



Evidence based medicine: how to practice and teach EBM. Edinburgh: Churchill Livingstone 1995.

++

16. Weingarten SR; Henning JM; Badangarw E et al. Interventions used in disease management programmes for patients with chronic illness – which ones work? Meta-analysis of published reports. BMJ 2002; 325: 925-928

Disease management programmes

Global

Systematic evaluation of published evidence regarding the characteristics and effectiveness of disease management programmes

Pooled effect sizes calculated with a random effects model.

Patient education was the most commonly used intervention, followed by education of healthcare providers and provider feed back. All studied interventions improved provider adherence to practice guidelines and disease control. There was insufficient evidence to draw conclusions on the most effective intervention/component.

Well conducted meta-analysis with appropriate use of statistics. One methodological problem was that the differences in outcomes between the depression and diabetes studies could have resulted from a difference in number of interventions used. More interventions were used in the depression studies.

Meta-analysis

1+

++

17. National Institute for Clinical

Guideline development

Description of methodology

- - - Methods document

4


58



INTERVENTION/AIM



Excellence. Guideline development methods. Available at http://www.nice.org.uk Accessed 07/07/0518. Linden A, Roberts N. A user's guide to the disease management literature: recommendations for reporting and assessing program outcomes. Am J Manag Care. 2005;11: 81-90

CDM literature

Global

Development of a framework for assessing the quality of study design and analysis of RCTs and observational studies about chronic disease

- The paper presents a guide to the reporting of CDM outcomes, including important elements of both study design and data analysis. The authors stress the importance of a control group and criticise the use of pre-post study design

- Expert opinion

4

+

19. Cretin S; Shortell SM; Keeler EB. An evaluation of collaborative interventions to improve chronic illness care framework and study design. Evaluation Review 2004;.28: 28-51

Interventions to improve CDM

US

Development of evaluation methods for CDM programmes and interventions

- Pre and post study design (see Linden18 for critique). The authors discuss the barriers to randomisation in studies of CDM.

Useful information on study design etc. and possible outcome measures.

Expert opinion

4

+

20. Singh D. Transforming Chronic Care Evidence about improving care for people with long-term conditions. HSMC

People with chronic

conditions

Global

Review of the literature

- The authors conclude that there was little high quality evidence about some of the interventions being implemented throughout the world.

Well designed comprehensive review of the global literature on CDM. No details of critical

Literature review

2/3


59

http://www.nice.org.uk/



INTERVENTION/AIM



University of Birmingham 2005

There was also limited evidence about combining different strategies into a broad programme of care, whether international programmes are directly transferable to the UK or the effects on clinical outcomes and use of healthcare resources. There was high quality evidence for the effectiveness of some of the elements of CDM programmes.

appraisal but 10% of studies checked by second reviewer for consistency

++

21. Epping-Jordan, J. E., Pruitt SD; Bengoa R et al. Improving the quality of health care for chronic conditions. Quality and Safety in Health Care 2004; 13 (4): 299-305


Global

Description of the adaptation of the CCM to form the ICCC framework

- The authors conclude that the framework provides a flexible and comprehensive base on which to build or redesign health systems in accordance with local resources and demands.

- Expert opinion

4

+

22. Bibby J; Reinertsen JL. NHS Modernisation Agency. UK Pursuing Perfection Programme. Leading for Improvement. Available at:

People with chronic

conditions

UK

Description of ideas and histories from the Pursuing Perfection programme.

- The paper concentrates on the role that chief executives and directors of Social Services must play to foster a culture of transformation for CDM

- Expert opinion

4

+/-


60



INTERVENTION/AIM



http://www.modern.nhs.uk/home/default.asp?site_id=40&id=9510. Accessed 19/08/05

23. Dixon, J; Lewis R; Rosen R et al. Managing chronic disease: what can we learn from the US experience? London: King’s Fund, 2004

CDM programmes

US

Description of some of the 5 major CDM programmes in use in the US and how such programmes may be of use in CDM in the UK

- All the models studied, used at least some of the elements of the CCM. 4/5 programmes identified high risk patients and targeted them for case management. Lower risk patients were offered CDM programmes. There was limited patient choice to participate or not in CDM programmes. There was a marked lack of focus on social care

Useful distillation of the major US programmes and their transferability to the UK

Expert review

4

++

24. Department of Health. NHS Modernisation Agency; Matrix Research and Consultancy. Learning distillation of chronic disease management programmes in the UK. London: DH, 2004

CDM programmes

being trialled in PCTs in England

UK

Assessment of the Kaiser Permanente, Evercare and Pfizer Informacare approaches to CDM

- The authors give examples of indicators that PCTs could use to assess their position in relation to CDM: Admission rates for

chronic conditions; Hospital utilisation by

particular groups; The number of GP

consultations related to chronic disease; and

No specific outcomes measured. Useful document for use of US CDM programmes in the UK.

Non-analytical

study

3

+


61

http://www.modern.nhs.uk/home/default.asp?site_id=40&id=9510





INTERVENTION/AIM



The level of use of care pathways

25. Boaden R; Dusheiko M; Gravelle H et al. Evercare evaluation interim report: implications for supporting people with long-term conditions. National Primary Care Research and Development Centre 2005

10 pilot sites in England,

implementing the Evercare

programme

Independent evaluation of the implementation of the Evercare programme in England

Hospital admissions

In the initial pilots it was found that Evercare provides a way of : Finding vulnerable

older people Giving preventive

health care Responding promptly

to deteriorations in health

Providing the potential to organise care around patients’ needs

An unexpected outcome was that a significant number of patients enrolled into Evercare were unknown to existing services. Hospital admissions were reduced by 1% in the pilot PCTs.

Non-analytical

study

3

+

26. McKee M; Nolte E. Responding to the challenge of chronic diseases: ideas from Europe. Clinical Medicine 2004; 4: 336-342


Europe

Description of the initiatives in other parts of Europe for CDM

- The author describes the weak evidence base that guides policy for CDM. The authors conclude that the diversity of European healthcare systems means that there are no universal

Useful overview of European situation and how the CCM could be implemented.

Expert opinion

4

+


62



INTERVENTION/AIM



solutions to the challenges of CDM. With regard to the implementation of the CCM to Europe the exclusive relationships with providers, integration across interfaces, appropriate financial incentives and explicit models are very important. Substantial investment in IT is also required in the Europe.

27. Lang T; Liberati A; Tampieri A et al. A European version of the Appropriateness Evaluation Protocol. Goals and presentation. The BIOMED 1 Group on Appropriateness of Hospital Use. Int. J. Technol. Assess. Health Care 1999; 15: 185-197

Hospitalutilisation

Development of a European version of the appropriateness

The review of the lists of reasons for inappropriate admissions provided the criteria for the AEP tool for Europe. The criteria for appropriateness of length of stay included 10 covering medical services, 6 for life support/nursing services and 8 related to the condition of the patient

Use of AEP in UK and other parts of Europe.

Expert opinion

4

+

28. Ribbe MW; Ljunggren G; Steel K et al. Nursing homes in 10 nations: a comparison between

Nursing home residents

UK, US; Denmark,

Data analysis and questionnaire surveys of nursing homes in 10 countries

- There was wide variation in nursing home policies and levels of use in the different countries studied.

Only of use for comparative policies for people with chronic diseases

Non-analytical

study

4


63



INTERVENTION/AIM



countries and settings. Age Ageing 1997; 26: 3-12

Iceland, Italy, Japan, The

Netherlands, Sweden,

Switzerland & France

+/-

29. Stuart M; Weinrich M. Integrated health system for chronic disease management: lessons learned from France. Chest 2004; 125 : 695-703

Health systems for CDM

FranceUS

Investigation of why France appears to have a good CDM strategy and how this could be applied in the US where there is a crisis in chronic disease.

- Since the mid 1990s France has developed regional community-based specialty systems, particularly for patients with respiratory disease. The authors conclude that the US can learn from the French experience in CDM.

Expert opinion

4

+

30. Scalvini S; Volterrani M; Giordano A et al Boario Home Care Project: an Italian telemedicine experience. Monaldi Arch Chest Dis. 2003; 60:254-257

Boario Home Care Project.

Italy

Development of a service centre with a teleworking model.

- Four types of services are now available – GPs; home tele-nursing for chronic patients; tele-diagnosis for palpitations and call centre services for hospitals. Preliminary results indicated that the pilot schemes have been successful.

Very preliminary results – no real evidence, as yet

Expert opinion

4

+/-

31. Frohlich A; Jorgensen J. Improving care in patients with chronic

People with chronic

conditions

Description of CDM programmes

- The Danish government are adopting a disease specific approach to CDM. COPD has been

Project started at the end of 2004. No results of evaluations as

Expert opinion

4


64



INTERVENTION/AIM



conditions. Available at http://www.integratedcarenetwork.org/publish/articles/000045/article.htm. Accessed 27/07/05

Denmark

chosen as a test case. They intend to use the CCM and the expanded CCM in use in British Columbia

yet.+

32. Stuart M; Weinrich M. Home and community based long-term care: lessons from Denmark. Gerontologist 2001; 41: 474-480

People with chronic

conditions

Denmark

Implications for the US of the Danish home and community based long-term care.

- After 12 years of implementing programmes for home and community CDM, the growth in expenditure has reached a plateau. The access and quality to long term care remains satisfactory. During this period costs in the US have increased and there are problems with the quality and access to care.

Denmark is often cited as a leader in the care of the elderly in Europe.

International policy

analysis/interviews

4

+

33. Corrigan JM; Greiner A; Erickson SM eds. Fostering rapid advances in health care: learning from system demonstrations: Institute of Medicine. Available at: http://www.nap.edu/ca

People with chronic conditions

US

Description of CDM programmes

- The authors conclude that a regional approach to CDM may be the way forward for the US.

Comprehensive description of CDM programmes in the US

Expert opinion

4

++


65

http://www.nap.edu/catalog/10565.html

http://www/



INTERVENTION/AIM



talog/10565.html. Accessed 20/07/05 34. Bosch X. Spain’s home healthcare programme goes nationwide. BMJ 2000;320:535

Elderly patients with chronic

diseases

Spain

Introduction and initial evaluation of a home healthcare programme

Patient quality of life (QOL) and reduction in hospital admissions

The service is delivered by multidisciplinary home healthcare teams. The results of a two year pilot demonstrated improved patient quality of life and a reduction in hospital admissions

The programme is also in use in Denmark.

Expert opinion

4

+/-

35. Busse R. Disease management programs in Germany’s statutory health insurance system. Health Affairs 2004; 23: 56-67

CDM programmes

Germany

Description of the problems implementing CDM programmes in Germany

- The author describes the problems with regard to the financing of care for people with chronic diseases. The sickness funds are not flexible enough to adapt to CDM programme requirements, or new treatment options.

Expert opinion

4

+

36. Mur-Veeman I; Hardy B; Steenbergen M et al. Development of integrated care in England and the Netherlands. Managing across public-private boundaries. Health Policy 2003;65: 227-41.

Integrated care

England& Denmark

Addresses the impact of the public-private mix in the Dutch and English health and social care systems.

- The authors conclude that there are similar problems of schism in the two countries and consider that these can be explained in terms of network theory as a basis for lessons for policy makers and those developing integrated care networks

Expert opinion

4

+/-

37. Shepperd S; Iliffe Hospital at home Assessment of the Mortality, 22 RCTs were included in All participants Systematic 1-


66

http://www.nap.edu/catalog/10565.html



INTERVENTION/AIM



S. Hospital at home versus in-patient hospital care. ( Cochrane Review) In The Cochrane Library, Issue 3, 2005. Chichester UK: John Wiley & Sons

setting

Global

effects of hospital at home compared with in-patient care

hospital length of stay (LOS) and patient and carer satisfaction.

the review. With trials evaluating early discharge hospital at home schemes, the odds ratio (OR) for mortality was 1.79; 95% CI 0.85 to 3.76 for patients >65 years (3 trials). The authors conclude that allocation to hospital at home produced a small reduction in hospital LOS, but increased the overall duration of care. Patients were generally more satisfied with care at home, but there was an increased burden on carers.

were > 18 years. Problems with bias and confounding.

review +

38. Temmink D; Hutten JB; Francke AL et al. Rheumatology out-patient nurse clinics: a valuable addition? Arthritis Rheum. 2001; 45:280-286

Rheumatology nurse clinics

Netherlands

Investigation of transmural rheumatology nurse-led clinics. Patients were allocated to transmural nurse care or standard care.

The need for rheumatology-related information, the use of aids and adaptations, the use of health care services and daily functioning

Between 1996 and 1998 a total of 227 patients were included in the study. 144 were referred to a transmural nurse clinic and the remaining 83 control patients received regular care only. 16 patients in the intervention group and 2 control patients dropped out. The control and

The nursing care is provided under the joint responsibility of a home care organisation and a hospital. Inadequate details given of baseline characteristics. Only a 6 month

Prospective cohort study

2-

+


67



INTERVENTION/AIM



intervention groups were similar at baseline apart from the intervention group had rheumatic disease for a significantly greater length of time than the controls. There was no difference between the intervention and control groups for any of the outcomes measured.

follow up for some outcome measures

39. Ministry of Health Services. Chronic Disease Management. Available at http://www.healthservices.gov.bc.ca/cdm. Accessed 01/08/05


BritishColumbia

- - Details of expanded CCM - Expert review

4

+

40. Macq J. Commentary: trials should inform structures and processes needed for tailoring interventions. BMJ 2005; 330: 665-666

SAHealthPlus programme

Australia

Critique of Australia’s trial of the SAHealthPlus programme.

- The author comments that the evaluation methods lack some vital data, such as information on patient characteristics, local context etc.

- Expert opinion

4

+/-

41. Ministry of Health 2004. Care Plus an Overview. Wellington: Ministry of Health. Available at

People with chronic

conditions

Description and evaluation of the pilot Care Plus CDM programme

Not specified The Care Plus (CP) programme was developed after extensive consultation by the Ministry of Health with

Some useful information for development and implementation of a CDM

Non analytical

study

4


68

http://www.healthservices.gov.bc.ca/cdm

http://www.healthservices.gov.bc.ca/cdm



INTERVENTION/AIM



http://www.moh.govt.nz/moh.nsf/wpg_Index/Publications- Care+Plus+an++Overview. Accessed 23/08/05

New Zealandkey personnel. A Care Plus Reference Group was set up to monitor the implementation of 3 pilot schemes. The evaluation of the pilots found that nurses played a critical role in the introduction of CP. The providers emphasised that they did not want disease specific programmes. Identifying patients proved a problem and most recruitment was opportunistic.

programme. Indicates funding allocations.

+/-

42. Dongbo F; Hua F; McGowan P et al. Implementation and quantitative evaluation of chronic disease self management programme in Shanghai, China: randomized controlled trial. Bull. WHO 2003; 81:174-182

Chronic disease self management

programme

China

Implementation and quantitative evaluation of self management programme

Outcomes were measured with a pre-tested self-administered questionnaire.

The four primary

classifications of outcome variables (health

behaviours, health status, self-efficacy,

and healthservice

954 patients with a confirmed diagnosis of hypertension, heart disease, chronic lungdisease, arthritis, stroke, or diabetes who lived in communities were assigned randomly to treatment (n = 526) and control (n = 428)groups. Overall, 430 (81.7%) and 349 (81.5%) patients in the treatment and control groups completed the six-month study. Patients

Adequate description of randomisation process. No intention to treat analysis. Treatment and control groups appeared similar at the start of the trial but no heterogeneity analyses were reported. The analyses however,

RCT 1-

+


69

http://www.moh.govt.nz/moh.nsf/wpg_Index/Publications-%20Care+Plus+an++Overview





INTERVENTION/AIM



utilization). who received treatment had significant improvements in weekly minutes of aerobic exercise, practice of cognitive symptommanagement, self-efficacy to manage own symptoms, and self-efficacy to manage their own disease in general compared with controls. They also had significant improvements in eight indices of health status and, on average, fewer hospitalizations.

controlled for baseline study variables.

43. Cheah J. Chronic disease management: a Singapore perspective. BMJ 2001; 323: 990-993

Chronic disease management

Singapore

Description of how the CCM could be adapted for CDM in Singapore and other parts of Asia

- Asian countries have generally not yet dealt with the issue of CDM, despite their recent epidemiological and demographic changes. A multipronged CDM approach has been developed, with elements of the CCM.

Expert opinion

4

+

44. National Coalition on Health Care, Institute for Health


Description of CDM approaches in the US

- Details the use of the CCM and the disease specific approach being

Expert opinion

4

+/-


70



INTERVENTION/AIM



Improvement. Curing the System. Available at www.improvingchroniccare.org.ACT_report_May_2002_Curing_The_System.pdf. Accessed 22/08/05

USused in the US

45. Bodenheimer T. Interventions to improve chronic illness care: evaluating their effectiveness> Dis. Manag. 2003;6: 63-71


US

Description of how CDM has evolved in the US. Review of the literature on the effectiveness of difference components of the CCM

The author concludes that at present, there is a limited evidence base to support individual components of the CCM. It appears that clinical outcomes improve more when several CCM components are used together.

Literature review confined to MEDLINE & Cochrane

Expert opinion/ literature review

4

+

46. World Health Organization. Are disease management programmes (DMPs) effective in improving quality of care for people with chronic conditions? WHO Regional Office for Europe’s Health Evidence Network (HEN) 2003


Global

Review of the evidence on the effectiveness of CDM programmes

- Most of the evaluated CDM programmes for chronic conditions have been shown to improve the management and control of the disease. There was a wide body of evidence on this for diabetes, depression, chronic heart failure and cardiovascular diseases. There was evidence that CDM programmes

Literature review confined to technology assessments, systematic reviews and meta-analyses.Discusses the limitations of the available evidence.

Literature review

4

++


71

http://www.improvingchroniccare.org.ACT_report_May_2002_Curing_The_System.pdf/





INTERVENTION/AIM



improve providers’ adherence to evidence-based standards of care. There was no evidence about which components of a DMP are most important for improving quality of care. There was no evidence of a direct link between the programmes and significant reductions in mortality, or of improvements in quality of life. There was no evidence on the cost-effectiveness of CDM programmes.

47. Feachem, R; Sekhri N; White K. Getting more for their dollar: a comparison of the NHS with California’s Kaiser Permanente. BMJ 2002; 324: 135-143

NHS

UK/US

Comparison of the NHS with Kaiser Permanente in California

Adjusted costs and

performance.

The per capita costs of the two systems, adjusted for differences in benefits, special activities, population characteristics, and the cost environment, were similar to within 10%. Some aspects of performance differed. In particular, Kaiser members experience more comprehensive and

See Talbot- Smith48 for detailed critique of this paper. Despite limitations, it is generally accepted that there is a reduction of bed use in the KP system.

Geographical correlation

study

3?

+/-


72



INTERVENTION/AIM



convenient primary care services and much more rapid access to specialist services and hospital admissions. Age adjusted rates of use of acute hospital services in Kaiser were one third of those in the NHS. The authors conclude that KP’s superior performance is mainly due to prompt and appropriate diagnosis and treatment.

48. Talbot-Smith A; Gnani S; Pollock A et al. Questioning the claims from Kaiser. Brit. J Gen. Pract.2004; 54:415-421

- Assessment of the accuracy of Feachem et al. paper 47

- The analyses revealed three main areas in which Feachem paper’s methodology was flawed:1. The patient

populations served by KP and by the NHS are fundamentally different.

2. Incorrect inflation of NHS costs

3. The use of non standardised data for NHS bed days

Expert opinion/analysis

4

+

49. The Welsh NHS Confederation. From

Kaiser Permanente

Visit to Kaiser Permanente in

- The authors conclude:Chronic disease

Expert opinion

4


73



INTERVENTION/AIM



the Rockies to the Rhondda. Available at: http://www.welshconfed.org/Health2015/FromtheRockiestotheRhondda.html. Accessed 16/08/05.

Colorado

Colorado. management, self-care and shared care should be further developed inWales Extended primary and community based health care services are the key to keeping people out ofhospital and should be developed and equipped to carry out this role;The KP models of rehabilitation and intermediate care can be adopted in Wales andshould form part of the plans for the development of services.Conspicuous and effective leadership is critical in managing change and in delivering and improving healthcare.The use of information and communications technology in the KP model is impressive.

+

50. Ofman JJ, Badamgarav E, Henning JM, et al. Does disease


Assessment of the evidence for clinical and economic effects of

- 16,917 references were identified between 1987 & 2001. 2963 titles were screened and of these 102

Well conducted review with adequate description of

Systematic review

2+

++


74

http://www.welshconfed.org/Health2015/FromtheRockiestotheRhondda.html





INTERVENTION/AIM



management improve clinical and economic outcomes in patients with chronic diseases? A systematic review. American Journal of Medicine 2004; 117: 182-192

CDM. studies were accepted. The results suggested that many CDM programmes are associated with improvements in the quality of care. Of the outcomes more frequently studied, CDM appeared to improve patient satisfaction ( 71% 12/17], patient adherence (47% [17/36]) and disease control (45% [33/74]), most commonly and cost related outcomes least frequently (11% to 16%)

search terms, inclusion/exclusion criteria etc.

51. Goetzel RZ; Ozminkowski RJ; Villagra VG et al. Return on Investment in disease management: A review. Hlth Care Financ. Rev. 2005; 26:1-19


Global

Assessment of return on investment (ROI) from CDM

Costs 44 studies were identified and a positive ROI was identified for programmes directed at chronic heart failure and multiple disease conditions. The evidence was inconclusive for diabetes studies and inconsistent for asthma management programmes. Depression programmes may only be cost effective for productivity outcomes not medical expenses.

Inadequate details of methods, but comprehensive search performed.

Literature review

4

+


75



INTERVENTION/AIM



52. Wagner EH; Davis C; Schaefer J et al. A survey of leading chronic disease management programs: are they consistent with the literature? Manag Care Q 1999; 7 : 56-66

Chronic disease management programmes

US

Survey of major CDM programmes

72 programmes were analysed and site visits performed. The survey and analysis were guided by the CCM, The survey indicated that most of the programmes were limited in their effectiveness and reach by their reliance on traditional patient education, rather than modern self-management support, poor linkage to primary care and reliance on referrals rather than population based approaches.

Survey/expert

opinion

4

+

53. National Institute for Clinical Excellence. Improving Outcomes for Children and Young People with Cancer. Available at http://www.nice.org.uk. Accessed 22/08/07

Children and young people with cancer

Service guidance - - Evaluates evidence for MDTs

Guidance/guidelines

3/4

+

54. Frich LM. Nursing interventions for patients with chronic conditions. J Adv Nurs 2003; 44: 137-153

Home based nursing for

elderly patients with chronic

diseases

Assessment of effectiveness of home nursing care interventions.

- 15 RCTs were included and were combined in a narrative. The majority of studies did not report statistically beneficial effects of the nursing

The heterogeneity of the studies in terms of interventions and outcomes

Systematic review

1-

+/-


76

http://www.nice.org.uk/



INTERVENTION/AIM



intervention on the outcomes measured.

included limits the conclusions of the review. Only included RCTs. Inadequate description of methods. It is possible that the author’s conclusions were overstated. Inconsistency between the tables and the text. The cost benefits were not well described

55. Loveman E; Royle P; Waugh N. Specialist nurses in diabetes mellitus (Cochrane review). In The Cochrane Library, Issue 3, 2005. Chichester UK: John Wiley & Sons

Diabetes specialist nurses

Global

Assessment of the effects of diabetes specialist nurses/nurse case manager in diabetes on the metabolic control of patients with type 1 and type 2 diabetes mellitus

Glycated haemoglobin, hypoglycaemia, hyperglycaemia and hospital admissions.

6 trials were included. There were no significant differences between the intervention and control groups in glycated haemoglobin (HbA1c). The evidence on episodes of hypoglycaemia and hyperglycaemia was inconsistent. Where reported, the evidence on hypoglycaemia and hyperglycaemia was not

Meta-analysis was not performed because of heterogeneity between the trials.

Systematic review

1-

+


77



INTERVENTION/AIM



conclusive. No information was found on BMI, mortality, long term diabetic complications, adverse effects or costs.

56. Griffiths C; Foster G; Barnes N et al. Specialist nurse intervention to reduce unscheduled asthma care in a deprived multiethnic area: the east London randomised controlled trial for high risk asthma (ELECTRA). BMJ 2004; 328 : 144- 149

Patients at high risk of asthma

UK

Patient review in a nurse-led clinic and liaison with general practitioners and practice nurses comprising educational outreach, promotion of guidelines for high risk asthma, and ongoing clinical support. Control practices received a visit promoting standard asthma guidelines. Control patients were checked for inhaler technique.

Percentage of participants receiving unscheduled care for acute asthma over one year and time to first unscheduled attendance.

Primary outcome data were available for 319 of 324 (98%) participants. Intervention delayed time to first attendance with acute asthma (hazard ratio 0.73, 95% confidence interval 0.54 to 1.00; median 194 days for intervention and 126 days for control) and reduced the percentage of participants attending with acute asthma (58% (101/174) v 68% (99/145); odds ratio 0.62, 0.38 to 1.01). In analyses of pre-specified subgroups, the difference in effect on ethnic groups was not significant, but results were consistent with greater benefit for white patients than for South Asian patients or those from other ethnic

Cluster randomised controlled trial

2+

+


78



INTERVENTION/AIM



groups.57. Vrijhoef HJ; Diedriks JP; Spreeuwenberg C. Effects on quality of care for patients with NIDDM or COPD when the specialised nurse has a central role: a literature review. Patient Educ Couns 2000; 41: 243-250

US, UK & Canada

Review of the literature on the effect on the quality of care of specialist nurse care in chronic obstructive pulmonary disease (COPD) and non-insulin dependent diabetes mellitus (NIDDM)

Survival, clinical parameters of relevance to the disease, quality of life, self-care & knowledge, patient satisfaction, use of medical resources

10 papers met the inclusion criteria. In all studies statistically significant effects were found in at least one outcome. Improvements in self care and QOL were found most often.

The heterogeneity of the papers makes any conclusions difficult. the authors discuss the limitations of the review and the need for further research.

Literature review

4

+

58. Murchie P; Campbell NC; Ritchie LD et al. Secondary prevention clinics for coronary heart disease: four year follow up of a randomised controlled trial in primary care. BMJ 2003; 326 : 84 -89

19 general practices

UK

Assessment of effectiveness of nurse-led secondary prevention clinics promoted medical and lifestyle components of secondary prevention and offered regular follow up for one

year.

Components of secondary prevention (aspirin, blood pressure management, lipid management, healthy diet, exercise, non-smoking), total mortality, and coronary events (non-fatal

myocardial infarctions and coronary

deaths).

Mean follow up was at 4.7 years. Significant

improvements were shown in the intervention group in all components

of secondary prevention, except smoking at one year, and these were sustained after four years except for exercise. The control group, most of whom attended clinics after the initial year, caught up before final follow up, and differences between groups were no longer significant. At 4.7 years, 100 patients in

Differences between intervention and control groups were small. Is it valid to conclude that nurse-led clinics are effective?

Follow up of a randomised controlled trial by postal questionnaires and review of case notes and national

datasets

3

+


79



INTERVENTION/AIM



the intervention group and 128 in the control group had died: cumulative death rates were 14.5% and 18.9%, respectively (P=0.038). 100 coronary

events occurred in the intervention group and 125 in the control group: cumulative event rates were 14.2% and 18.2%, respectively (P=0.052). Adjusting for age, sex, general practice, and baseline secondary prevention, proportional hazard ratios were 0.75 for all deaths (95% confidence intervals 0.58 to 0.98; P=0.036) and 0.76 for coronary events (0.58 to 1.00; P=0.049)

59. Taylor SJC; Candy B; Bryar RM et al. Effectiveness of innovations in nurse-led chronic disease management for patients with chronic obstructive pulmonary

Assessment of the effectiveness of innovations in management of chronic disease involving nurses for patients with chronic obstructive

Survival, use of health care resources, activities of daily living, patients’ health related quality of life and

9 RCTs were identified. All the interventions seemed to be variations on a case management model. The interventions described could be divided into brief (one

month) and longer term

Most trials reviewed had methodological problems. Well described study

Systematic review.

1-

+


80



INTERVENTION/AIM



disease: systematic review of evidence. BMJ2005; 385: 331-338

pulmonary disease carers’ quality of life.

(around a year) or more intensive interventions.

Only two studies examined the effect of brief interventions, these found little evidence of any benefit. Meta-analysis of the long term interventions failed to detect any influence on

mortality at 9-12 months' follow-up (Peto odds ratio 0.85, 95% confidence interval 0.58 to 1.26). There was evidence that the long term interventions had not improved patients' health related quality of life, psychological wellbeing, disability, or pulmonary

function. The evidence on whether long term interventions reduced

readmissions to hospital was equivocal. There was little or no evidence available for the effect on patients' satisfaction, self management skills, adherence with treatment


81



INTERVENTION/AIM



recommendations, the likelihood of smoking cessation, and the effect of the interventions on carers

60. Sulch D; Perez I; Melbourn A et al. Randomized controlled trial of integrated (managed) care pathway for stroke rehabilitation. Stroke 2000; 31 : 1929-1934

Stroke rehabilitation

patients

Comparison of integrated care pathway with standard multidisciplinary care

Hospital length of stay

An evidence based care pathway was developed. The age, sex, pre-morbid functional ability and stroke characteristics of the two groups were comparable. There were no differences in mortality rates (10 [13%] versus 6 [8%]), institutionalization (10 [13%] versus 16 [21%]), or length of hospital stay (50±19 versus 45±23 days) between patients receiving ICP or

multidisciplinary care. Patients receiving conventional multidisciplinary care improved significantly faster between 4 and 12 weeks (median change in Barthel Activities of Daily Living Index 6 versus 2; P<0.01) and had higher QOL scores at 12

There was no discussion of the problems of lack of blinding, but the problems of bias were well covered. Block randomisation was used to avoid the effects of imbalance caused by time trends. Evidence for the effectiveness of multidisciplinary care

Randomised controlled

trial

1-

+/-


82



INTERVENTION/AIM



weeks (65 versus 59; P=0.07) and 6 months (72 versus 63; P<0.005).

There were no significant differences in the mean duration of physiotherapy (42.8±41.2 versus 39.4±36.4 hours) or occupational therapy (8.5±7.5 versus 8.0±7.5 hours) received between the 2 groups.

61. Kwan J; Sandercock P. In-hospital care pathways for stroke (Cochrane Review). In The Cochrane Library, Issue 3, 2005. Chichester UK: John Wiley & Sons

Acute stroke patients

Global

Assessment of the effects of care pathways compared with standard medical care

Mortality, discharge destination, patient satisfaction and quality of life (QOL).

Three RCTs and 12 non-randomised trials were included. There was no significant difference between care pathway and control groups for mortality or discharge destination. Patient satisfaction and QOL were significantly lower in the care pathway group (p=0.02 and p<0.005 respectively).

Most of the evidence came from non-randomised trials and the likelihood of bias and confounding is high.

Systematic review

1-

+

62. Thomas L; Cullum N; McColl E et al. Guidelines in professions allied to medicine ( Cochrane Review). In The

Professions allied to medicine

Global

Identification and assessment of the effects f the introduction of guidelines in nursing, midwifery

Processes of care

18 studies were included. The reporting of study methods was inadequate for all studies. 9 studies were identified for comparison. 3/5 studies

Choice of comparator was physician care. Evidence from the included studies does not

Systematic review

1-

+/-


83



INTERVENTION/AIM



Cochrane Library, Issue 3, 2005. Chichester UK: John Wiley & Sons

& professions allied to medicine.

demonstrated improvements in some processes of care and 6/8 improvements in outcomes of care.

really support the authors’ conclusions.

63. Stuck AE; Siu AL. Comprehensive geriatric assessment: a meta-analysis of controlled trials. Lancet 1993; 342 : 1032-1036

Literature on assessment of

geriatric patients

Global

Meta-analysis of trials of comprehensive geriatric assessment (CGA)

Mortality; hospital admission; physical and cognitive function; living at home

28 trials were included for meta-analysis comprising 4959 subjects allocated to one of 5 CGAs and 4912 controls. Combined odds rations (95% confidence interval) of living at home at follow up was 1.68 (1.17-2.41) for geriatric evaluation and management units, 1.49 (1.12-1.98) for hospital at home services and 1.20 (1.05-1.37) for home assessment services. There was no significant effect on mortality. Covariate analysis showed that programmes with control over medical recommendations and extended ambulatory follow-up were more likely to be effective.

Adequate description of methods and statistical analyses

Meta-analysis

1-

++

64. Castlefields Health Centre: Chronic

Primary care centre

Evaluation of the implementation of

Hospital admissions and

The report covers mental health, cancer, heart

Preliminary results need

Non analytical

4


84



INTERVENTION/AIM



Disease management. http://www.natpact.nhs.uk/uploads/Castlefields%20Report.doc. Accessed 02/08/05

UKcase management approach to CDM

length of stay. disease and diabetes. Preliminary results indicate that there was a 15% reduction in admissions and 31% reduction in hospital length of stay. The practice developed disease registers for call and recall of patients and nurse-led clinics where protocols were applied.

confirmation Small numbers of subjects.

study.+/-

65. Hutt KF; Rosen R; McCauley J. Case managing long-term conditions. King’s Fund 2004

Case management

Europe and N. America

Review of the literature on case management

Hospital admissions, use of emergency departments, length of stay and costs.

The evidence from 19 studies was assessed. There was no good evidence for the effectiveness of case management in reducing hospital admissions in elderly patients. The evidence was inconsistent for the effect on the use of emergency departments. Most studies showed reductions in hospital bed days. It was not possible to directly compare costs because of the heterogeneity of the comparators of the included studies.

Well conducted and described review

Literature review

4

+


85

http://www.natpact.nhs.uk/uploads/Castlefields%20Report.doc





INTERVENTION/AIM



66. Marshall M; Gray A; Lockwood A et al. Case management for people with severe mental disorders ( Cochrane Review) In The Cochrane Library, Issue 3, 2005. Chichester UK: John Wiley & Sons

Patients with severe mental

disorders

Determination of the effects of case management

Numbers remaining in contact with psychiatric services.

Number of psych. Hospital admissions

Clinical & social outcomes

Costs

Case management increased the numbers remaining in contact with services (for case management odds ratio = 0.70; 95% CI 0.5-0.98; n=1210). There were twice the number of admissions with case management (OR= 1.84; 95% CI 1.33-2.57; n=1300. There was no significant effect of case management on clinical or social outcomes. There was insufficient evidence on cost effectiveness

See article by Ziguras68 for critique

Systematic review

1-

+

67. Ziguras SJ; Stuart GW; Jackson AC. Assessing the evidence on case management. Br. J. Psych 2002; 181: 17-21

Case management

evidence

Global

Discussion on how 2 systematic reviews (see ref 67) on case management could reach different conclusions

- The conclusions of this review were that case management was effective in reducing the symptoms of illness, improving social function, increasing client satisfaction reducing drop-out from services.The difference in conclusions between the 2 reviews resulted from the differences in inclusion criteria (non randomised

Important to note that both studies were similar for the outcomes common to the 2 studies.

This study illustrates clearly the problems of systematic reviews with the necessity of

Systematic review &

expert opinion

1-

+


86



INTERVENTION/AIM



trials were not included by Marshall 66.

finding a balance between rigorous inclusion criteria and statistical power.

68. Available at: http:// www.natpact.nhs .uk/eventmanager/uploads/cdm_roadshow4data_ presentation

Evercare CDM programme

Description of tools and software for identifying high risk patients.

- The Health Numerics software for identifying high risk patients is being piloted in the North Tees PCT.

Presentation 4

+/-

69. Renders CM; Valk GD; Griffin S et al. Interventions to improve the management of diabetes mellitus in primary care, outpatient and community settings ( Cochrane Review) In The Cochrane Library, Issue 3, 2005. Chichester UK: John Wiley & Sons

Health professionals

treating patients with diabetes

mellitus in primary care, outpatient and

community settings

Global

Assessment of the effects of different interventions, targeted at health professionals or the structure in which they deliver care.

- 41 studies were included. In 12 studies the interventions were targeted at health professionals, in 9 they were targeted at the organisation of care and 20 studies targeted both. A combination of professional interventions improved process outcomes. The evidence was inconclusive for the effect on patient outcomes.

Methodological quality of the studies was poor and there was heterogeneity in terms of interventions, participants, settings and outcomes.

Systematic review

1-

+

70. Available at: http://www.wise.nhs.uk/cmsWISE/Clinical+Themes/CHD/CHD.htm Accessed 08/08/05

GP disease registries for

coronary heart disease

Service improvement guide for coronary heart disease

Patient compliance

- - Guideline/guidance

3/4

+


87

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INTERVENTION/AIM



UK71. King’s Fund. Available at: http://www.kingsfund.org.uk/health_topics/predictive_risk.html. Accessed 03/09/05


UK

Production of a risk prediction system for use by PCTs

Tool published in September 2005.

Literature review on predictive risk also available at this website

- -

72. Oxman AD; Thomson MA; Davis DA et al. No magic bullets: a systematic review of 102 trials of interventions to improve professional practice. CMAJ 1995; 153 : 1423-1431

Literature on improving practice

Global

Determination of the effectiveness of different types of interventions in improving health professional performance and health outcomes.

102 trials met the inclusion criteria. The authors concluded that there was no one method that was effective in changing health professionals’ behaviour but there are a range of interventions that if used appropriately could lead to improvements in professional practice and patient outcomes.

Seminal paper on changing physicians’ behaviour. Well described study, with good description of methods.

Systematic review

1+

++

73. Appleby J; Harrison A; Devlin N. What is the Real Cost of More Patient Choice? London: Kings Fund, 2003

Patient choice

NHS

Analysis of policies for improving patient choice

- The authors identify two major constraints on the development of patient choice: Conflict

of allowing patients unconstrained choice of treatment and resource allocation

Second, the wider policy

Expert opinion

4

+/-


88

http://www.kingsfund.org.uk/health_topics/predictive_risk.html





INTERVENTION/AIM



framework surrounding choice is, at present, poorly developed.

They conclude that providing greater patient resource will require extra resources.

74. Sciegaj M; Capitman JA; Kyriacou CK. Consumer directed community care: race/ethnicity and individual differences in preferences for control. Gerontologist 2004; 44: 489-499

Elderly patients

US

Examination of preferences for control in their own care.

Patients’ expression of preferences for involvement in their own care.

731 elderly patients, aged >70 years were interviewed. Multivariate analyses found significant differences between race/ethnic groups. People of Chinese or Latino origin were more likely to choose case management model when they felt in control of their own lives

The patient mix was restricted to African American, Chinese and White Western European American. Results not well described.

Historical case series

4

+/-

75. Funk LM. Who wants to be involved? Decision making preferences among residents of long-term care facilities. Can J Aging 2004; 23: 47-58

100 residents of six long-term care (chronic

disease) facilities.

Canada

Data collected through structured, in-person interviews were used to examine participation preferences with respect to four types of care decisions

Patients’ expression of preferences for involvement in their own care.

Residents with higher levels of formal education, a greater number of chronic conditions, and greater confidence about the worth of their input tend to prefer more active involvement in decision making.

Qualitative 4

+


89



INTERVENTION/AIM



(bedtimes, medication choice, room transfer, and advance directives), as well as predictors of these preferences.

76. Oliver S; Clarke-Jones L; Rees R et al. Involving consumers in research and development agenda setting for the NHS: developing an evidence-based approach. Health Technol Assess 2004; 8: 1-148

Consumer involvement in research and development

Global

Review of literature on consumer

involvement in research &

development.

- 286 documents were identified. The authors conclude that involving consumers in research requires resources and time, but that the only

way to learn about consumer involvement is to take note from studies involving them. There were many barriers to consumer involvement

identified but these can be overcome with good leadership, adequate

resources and by building good working relationships.

Most of the literature was

descriptive with a high risk of

bias

Systematic review

1-

++

77. Hibbard JH; Peters E. Supporting informed consumer health care decisions: data presentation approaches that

Users of healthcare

information

Global

Review of literature on human decision

making

- The evidence suggests that comprehension,

motivation and the actual use of information are

increased when cognitive effort is reduced and the

- Expert review/opini

on

4

+/-


90



INTERVENTION/AIM



facilitate the use of information in choice. Ann Rev Public Health 2003; 24: 413-433

meaning of the information is explained clearly for the consumer. Consumers differ in their ability to handle different

types of information. Three factors need to be taken into consideration in selecting information

presentation: The complexity &

amount of information The skills &

experience of the users The nature of choice

78. The British Liver Trust. Living a Healthy Life with Long Term Illness. Leland Stanford Junior University, 1999 cited in reference 7979. Department of Health. The Expert Patient. Available at: http://www.dh.gov.uk/assetRoot/04/10/27/61/04102761.pdf. Accessed 14/08/05

People with chronic disease

UK

Description of the Expert Patient

Programme (EPP)

- The report recommends action over a six year period to introduce lay-led self-managementtraining programmes for patients with chronic diseases within the NHS in England. A pilotphase between 2001 and

Useful document with background of the rationale

behind the development of

the EPP

Expert opinion

4

+


91

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INTERVENTION/AIM



2004 will evaluate local programmes and between 2004 and 2007 programmes will be mainstreamed within all NHS areas.

80. Borland J. An independent evaluation of the process of embedding the Expert Patients Programme (EPP) in Swansea and Gwynedd Local Health Boards. 2004. Cited by Shaw et al 83

Expert Patients Programme

(EPP)

Swansea & Gwynedd

LHBs

Evaluation of the implementation of

the EPP.

Success of the pilot schemes and factors determining success.

The conclusions of the evaluations were that the pilot programmes in Wales have been successful in terms of the positive impact on patients. The factors necessary for success are publicity, well trained and motivated trainers, appropriate venues and professional support. The author concludes that the programme should be implemented more widely in Wales. There should be effective methods for evaluation and monitoring.

Important paper for EPP in Wales

Interviews 4

+

81. Shaw C; Faulkner A; Holm S et al. Self care and the Expert Patient research network scooping report. Available at

Expert patient programmes

Wales

Scoping exercise to determine

feasibility and mechanisms for a self care research network and to

- The authors conclude that a self care network is vital. Research is being performed in Wales but this needs a coordinated approach. Two pilot sites

Relevant to self care in Wales.

Expert opinion

4

+


92



INTERVENTION/AIM



http://www. identify research on self care in Wales.

were set up in Gwynedd and Swansea LHBs and is now being extended to the rest of Wales,

82. Department of Health. Research evidence on the usefulness of self care support networks for care of people with minor ailments, acute illness and long-term conditions and those taking initiatives to stay healthy. DH 2004. Available at: http://www.dh.gov.uk/PublicationsAndStatistics/Publications/PublicationsPol icyAndGuida nce/PublicationsPolicyAndGuidanceArticle/fs/en?CONTENT_ID=4114867&chk=dB6WfN. Accessed 23/08/05

Self care support networks

UK

Scoping literature review on

effectiveness of self care support networks.

- 5/1194 systematic reviews met the inclusion criteria, of these 4 showed positive effects in terms of health outcomes. 45 primary research articles were also included and 30 showed a positive effect on outcomes. The authors conclude that there is some evidence to support the use of self care support interventions but there is a need for further research and evaluations.

Literature review

3/4

+

83. Yu Pl; Ye W; Liu XR et al. Evaluation on the effectiveness for

Patients with hypertension

Awareness of diagnostic criteria for

Article in Chinese,

therefore no

Randomised trial

? see comments


93

http://www.dh.gov.uk/PublicationsAndStatistics/Publications/PublicationsPolicyAndGuidance/PublicationsPolicyAndGuidanceArticle/fs/en?CONTENT_ID=4114867&chk=dB6WfN





INTERVENTION/AIM



self management of hypertensive patients in a community. Zhongua Liu Xing Xue Za Zhi 2003; 24 : 790-793. Abstract only

hypertension details about methods read

84. Corben S; Rosen R. Self-management for long-term conditions. King’s Fund 2005. Available at : http:// www.kingsfund.org/publications. Accessed 05/07/05

Patients with chronic diseases

UK

Review of literature on patients’

perceptions about self management of

their own conditions. Interview of

patients

- The review sets out 3 key areas for service development: Improving the

skills of health professionals to support self management

Improving the provision of information

Increasing the flexibility in service provision to fit in with other commitments of patients.

No details of methods

Expert review

4

+

85. Bodenheimer T; Lorig K; Holman H et al. Patient self-management of chronic disease in primary care. JAMA 2002; 288: 2469-2475

Chronic disease Description of two versions of the

patient physician relationship in

chronic disease – the traditional

relationship and the

- Evidence from controlled trials suggests that programmes teaching self management skills are more effective than information-only patient education in improving

Discusses the limitations of the self management

literature.

Expert opinion

4

+


94

http://www.kingsfund.org/publications

http://www.kingsfund.org/publications



INTERVENTION/AIM



patient-professional partnership

clinical outcomes. In some circumstances self-management education improves outcomes and can reduce costs for arthritis and possibly for adult asthma patients.

86. Warsi A; Wang PS; LaValley MP et al. Self-management education programs in chronic disease: a systematic review and methodological critique of the literature. Arch Intern Med 2004; 164: 1641-1649

Self management programmes

Global

Review of the literature on effectiveness

71 trials were included. A lot of trials had methodological problems. There was evidence for a positive effect on outcomes in patients with diabetes and asthma. The authors conclude that there is a need for well designed trials, with a modified CONSORT statement, of self management programmes

Limited search. Search period finished 1999. Well designed and described

study. Publication bias and centre effect

possible.

Systematic review

2++

+

87. Gibson PG; Powell H; Coughlan J et al. Self management education and regular practitioner review for adults with asthma. In The Cochrane Library. Issue 3, 2005. Chichester UK: John Wiley & Sons

Self management programmes for

patients with asthma

Global

Assessment of the effectiveness of

asthma self-management

programmes in combination with

regular health practitioner review

Admission to hospital; emergency room visits; unscheduled visits to the doctor; days off work or school; nocturnal asthma; quality of life. Lung

36 trials were included which compared self management education with usual care. Self management education reduced hospitalisations ( relative risk [RR] 0.64,95% CI 0.56-0.81); days of work or school (RR 0.79, 95% CI 0.67 -0.93); nocturnal asthma

Systematic review

1-

++


95



INTERVENTION/AIM



function tests (RR 0.67, 95% CI 0.56-0.79); QOL ( standard mean difference 0.29, CI 0.11-0.47). Lung function was unchanged.

88. Newman S; Steed L; Mulligan K. Self management interventions for chronic illness. Lancet 2004; 364: 1523-1537

Patients with type 2 diabetes,

arthritis and asthma.

Review of the literature on self

management interventions

(SMIs)

21 studies were identified for diabetes, 24 for arthritis and 18 for asthma. SMIs for diabetes, asthma and diabetes differed in their main objectives. For asthma the objectives focussed on prevention of acute exacerbations. For diabetes and arthritis the objectives were more diverse. When comparing across conditions it is important to take into account these different objectives. The time demands of SMIs could result in low participation and high rates of attrition. Attrition rates varied form 0% to 50% for each illness. The interventions that were most effective provide some guidance as to the

Expert review

4

+


96



INTERVENTION/AIM



components required for further development of SMIs.

89. Kennedy A; Nelson E; Reeves D et al. A randomised controlled trial to assess the impact of a package comprising a patient-orientated, evidence based self-help guidebook and patient-centred consultations on disease management and satisfaction in inflammatory bowel disease. Health Technology Assess 2003; 7: 1-113

Follow-up outpatient clinics

at 19 hospitals NW England.

Evaluation of a whole systems

approach to self-management using

a guidebook developed with

patients combined with physicians

trained in patient-centred care.

Rates of hospital outpatient consultation, quality of life (QOL) and acceptability to patients.

Randomisation was by treatment centre. 19 hospitals were randomised to 10 control sites and nine intervention sites. Consultants from intervention sites received training in patient centred-care before recruitment. After 1 year the intervention resulted in fewer hospital visits: 1.9 vs 3.0 /year (p<0.001) without a change in the number of visits to primary care. The intervention did not reduce the QOL. There were fewer symptom relapses: 1.8vs2.2 (p<0.01). Qualitative results indicated that the guidebook was effective. There was a tendency to cost effectiveness for the intervention.

Analysis with recognition of

clustering. Well designed and

described study with appropriate

methods.

Cluster randomised controlled

trial

2+

++

90. Wright CC; Barlow JH; Turner AP


Determination of the effectiveness of

Cognitive symptom

185 patients with a variety of chronic diseases

Usual problems of bias and

Pre and post test

4


97



INTERVENTION/AIM



et al. Self-management training for people with chronic disease: An exploratory study. Br. J. Hlth. Psychol 2003; 8:465-476

UK

a community based chronic disease self management course

management; self efficacy (disease & symptoms) & communication with physician.Health service resource use.

participated. 47 people were lost to follow up. Data were collected by self-completed questionnaires before attendance and at 4 month follow up. The sample comprised 72% women (mean age 53yrs). No significant differences were found between responders and non responders for the outcomes measured.

accuracy of self reported

questionnaires.

questionnaire survey +

91. Piette JD. Interactive voice response systems in the diagnosis and management of chronic disease. Am J Manag Care 2000; 6: 817-827

Patients with chronic diseases

Global

Assessment of the effectiveness of interactive voice

response systems in the diagnosis and management of chronic disease

There were few published outcome evaluation

studies. The evidence from such studies indicated a small

improvement in clinical outcomes.

Poorly described paper with inadequate reporting of methods and

results

Literature review

4

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98

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