Epilepsy & Behavior 1, S15–S20 (2000)doi:10.1006/ebeh.2000.0105, available online at http://www.idealibrary.com on

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Elements of Effective Chronic Care: A Model forOptimizing Outcomes for the Chronically Ill

Brian Austin, Edward Wagner, M.D., M.P.H.,Michael Hindmarsh, M.A., and Connie Davis, M.N., ARNP

Current estimates are that there are 2.3 million individuals with epilepsy among 99 million Americanssuffering from chronic medical conditions. The healthcare system is designed to treat acutely illpatients and, as a result, often fails to meet the needs of the chronically ill. Care is provided in brief,problem-focused visits. Multiple studies have shown that this type of standard practice producessuboptimal care and outcomes, and is unsatisfactory to both patients and care providers. Wedeveloped the Chronic Care Model in an effort to synthesize system and practice changes associatedwith better outcomes. In patient care as described in this model, patient–provider interactions areplanned in advance in accordance with evidence-based guidelines. A primary focus is on assistingpatients and their families in becoming competent self-managers. The Chronic Care Model has beensuccessfully implemented by more than 200 healthcare systems. In this paper, we explore theapplicability of the Chronic Care Model in managing patients with epilepsy. © 2000 Academic Press

Key Words: care delivery; system redesign; chronic illness; epilepsy; medical care; patient educa-

tion.

INTRODUCTION

Based on 1995 estimates, there are 2.3 million individ-uals with epilepsy (1) among the 99 million Americanswho suffer from chronic illness of all types (2). By theyear 2010, the number of individuals with one or morechronic illnesses is expected to reach 120 million (2).Among the elderly, as much as 75% of the total cost ofdirect medical care in the United States is spent on indi-viduals suffering from chronic illnesses (3). In view ofthe enormity of these numbers, the need for a healthcaresystem that is able to provide effective care for individ-uals with chronic conditions is obvious. Healthcare sys-tems have also been slow to recognize that patients withepilepsy and their families, like other populations of thechronically ill, are the primary managers of their condi-tions (4). Patients must take effective medications asprescribed, monitor their diets, and ensure they are get-ting enough sleep and exercise (5). The role of the health-care system is to assist patients and caregivers in under-standing and mastering the tasks of managing epilepsyand its impacts. Quite simply, however, the system as itcurrently exists is falling far short of performing this

function.

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THE DEFICIENCIES OF CURRENTCHRONIC ILLNESS CARE

Patients with epilepsy and other chronic illness facea myriad of self-management tasks and daily chal-lenges in their struggle to sustain hope and live full,productive lives (6). To support them in this work,high-quality medical care must do three things:

• ensure the delivery of the appropriate interven-tions that have been shown by strong clinical evidenceto be effective (6);

• activate and empower patients to take responsi-bility for managing their conditions (7, 8);

• provide information, resources, and sustainedsupport to assist patients in self-management tasks (6).

Shortcomings in the medical care of patients withchronic illness have been clearly and frequently doc-umented (6). Surveys and audits have demonstratedthat well-meaning practitioners are often unable toadhere to well-established guidelines for the clinicalaspects of care for patients with a number of chronicconditions. Provider surveys also indicate that many

feel they lack information and are too rushed to meet

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the educational, behavioral, and psychosocial needs ofchronically ill patients (9).

Deficiencies in provider training certainly play arole in this problem, but the traditional organizationand culture of medical practice may be more at fault(6). Medical practices, especially in primary care, areorganized to meet the acute and urgent needs of pa-tients individually, as they present themselves at vis-its. The provider’s goal is a correct diagnosis—partic-ularly, ruling out serious disease and treating symp-toms. With a random mixture of acute and chronicallyill patients to be seen over the course of a busy day,even a motivated provider has difficulty delivering allof the elements of care associated with good outcomesin chronic illness—systematically performed assess-ments, interventions supported by clinical evidence,effective education, psychosocial support, and ongo-ing follow-up—in an atmosphere of partnership withthe patient and his or her family.

A well-intentioned provider in such an environ-ment also must cope with what has been described asdual task theory, which suggests that when con-fronted with multiple demands and tasks, individualswill gravitate to those that have the greatest emotionalinvestment (6). Because it appears that physicians fearmissing serious illness more than other types of errors(10), the behavioral preference for curable disease overproviding the elements of good chronic illness care isunderstandable, although far from desirable.

Since office staff structures and supporting clinicalsystems are designed to assist providers, they too aregeared to react to acute illness and urgent care (6). Thesimple and powerful organizational step of meeting asa team to clarify roles and organize themselves forchronic illness care is often left undone. Nonphysicianstaff are occupied with managing patient flow andmaximizing access, so that responsibilities for plan-ning care, counseling, and follow-up are not explicitlydelegated and, by default, fall to the physician or areomitted entirely. A paper medical record entombsrather than organizes information necessary for plan-ning care, and for patients with chronic illness, therecord is likely to be staggeringly thick. This lack oforganization and information reinforces the focus ontoday’s symptoms and physiologic abnormalities andincreases the reliance on the personal recollections ofboth patient and provider.

These shortcomings in the delivery of routine carefor patients with chronic illness contribute to poor

outcomes in a number of ways, including (6):

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• delays in detecting complications or declininghealth status due to incomplete assessments or incon-sistent or inadequate follow-up;

• failures in self-management of the illness becauseof patient passivity or lack of information resultingfrom inadequate or inconsistent patient education, as-sessment, motivation, and feedback;

• reduced quality of care due to ineffective inter-ventions;

• undetected or inadequately managed psychoso-cial problems.

SUCCESSFUL CHRONIC ILLNESS CARE

Useful clues about the characteristics of practicesand healthcare systems associated with improved out-comes in chronic disease can be found in the literature(6). For example, in addition to the therapies studied,drug treatment trials have shown improved outcomesby wrapping the drug therapy in a carefully con-structed and maintained care model to ensure contin-ued follow-up, regimen compliance, and careful andregular assessment of side effects and other outcomes.

Successful intervention trials follow an explicit plan orprotocol that is executed largely through delegation ofkey care processes to nonphysician members of the careteam (6). The systematic and explicit delegation of majoraspects of the protocol to nurses, pharmacists, and othermembers of the care team is a hallmark of successfulefforts to improve chronic illness outcomes (11). And, asa result, the work of the team is supported by informa-tion systems that track key processes and outcomes andensure continued and regular contact with the subjects.Successful efforts to improve chronic disease care out-side of the practice team setting have many of the samefeatures. Thirty years ago, innovators like John Runyanand colleagues (12) demonstrated better outcomes forlow-income patients with chronic illness by establishingclinics that provided regular, protocol-directed care witheffective use of nonphysician staff. More recently, suc-cessful disease management programs have used thesesame principles in designing their chronic care programs(13).

THEMES IN SUCCESSFUL CHRONICILLNESS CARE

Three important themes emerged from the literature

and our work at Group Health Cooperative (6). These

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themes are implicit in the structure of the ChronicCare Model, although they are not explicitly calledout. The first theme is that care should be evidence-based, meaning assessments, treatments, and deliveryapproaches must be based on the best available clini-cal evidence, rather than on consensus or expert opin-ion. Also, care should be population-based, with caredelivery designed to ensure that all relevant membersof a population receive the healthcare services theyneed, and patients are tracked to determine whetherthey have received needed services. The use of regis-tries, proactive planning, and outreach are generallyimportant parts of the population-based approach. Fi-nally, care must be truly patient-centered, with thegoal of increasing the participation, confidence, andskills of patients and their families receiving high pri-ority in program design and resource allocation andwith providers trained to support patients’ self-man-agement skills. This is the area of successful chronicillness care with which most healthcare systems cur-rently have the least experience.

THE CHRONIC CARE MODEL

The Chronic Care Model (Fig. 1) is an attempt tosynthesize the specific practice and system changes

FIG. 1. The Chronic Care Model. Adapted with permission fromagner EH, Davis C, Schaefer J, Von Korff M, Austin B. A survey

f leading chronic disease management programs: are they consis-ent with the literature? Manag Care Q 1999;7(3):56–66. © 1999spen Publishers, Inc.

employed in successful programmatic efforts to im-

prove the care of patients with chronic illness. Itsearlier development has been described elsewhere (6).In the past 5 years, we have explored the validity andutility of the Chronic Care Model in several ways.First, we have used both the early and current gener-ations of the model to direct Group Health Coopera-tive’s diabetes improvement activities, and recent ev-idence shows significant improvements in the diabetescare process (14). Second, the model’s validity hasbeen assessed and improved through intensive reviewby a large group of experts, revision based on theirreview, and re-review (15). Third, we assessed howwell the revised model captured the best current prac-tice in chronic illness care as exemplified by the 72nominated programs. Fourth, as described later, morethan 200 healthcare systems have used the model asthe basis for organized delivery system change via aseries of collaborative quality improvement efforts.

To begin, the Chronic Care Model places the health-care system within the context of the larger commu-nity, which may provide access to critical supportiveor educational services otherwise unavailable inhealthcare systems. As depicted in the bottom third ofthe model, improved outcomes are the result of moreproductive interaction between patients, caregivers,and healthcare professionals. This entails better in-formed and more active patients and better preparedpractice teams. Preparation for providers means hav-ing the necessary information, time, clarity of roles,and adequacy of resources to ensure effective clinicalmanagement. Patients and their families must alsohave sufficient information and enough confidence,reinforced by their provider team, to optimize theirinvolvement in their care. The model posits that pro-ductive interactions between these two groups willensure the delivery of services that will lead to thedesired outcomes, including improved health statusand satisfaction and reduced or better directed health-care utilization and cost.

An early product of and central ingredient for pro-ductive interactions is the drafting of a patient-cen-tered, collaborative care plan based on effective ther-apies (16). Regular, appropriately targeted assessmentguides the care plan. Treatment plans must be respon-sive not only to a patient’s current physiologicalneeds, but also to his or her preferences, psychologicalneeds, and social circumstances.

The middle section of the model represents the en-hancements to clinical practice that contribute to theproductive interactions described above. The applica-

tion of many of these elements of the Chronic Care

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Model to improving the organization of care for peo-ple with epilepsy has been described previously (4).

Beginning at the left, self-management support re-fers to helping patients and their families cope withthe challenges of accommodating and treating chronicillness (16). Traditional chronic disease patient educa-tion programs have as their goals the transfer of spe-cific knowledge and the alteration of patient behaviorsassociated with the disease and its treatment. Theassumption underlying such programs is that in-creased knowledge leads to desired behavior change,and it is changes in behavior that improve outcomes.Recent research suggests a somewhat different view.Lorig and Holman (7) propose that a critical step is tohelp patients become more active participants intheir care, and they assert that increases in self-efficacy—the confidence that one can manage an ill-ness—and skills may be the common medium throughwhich self-management is improved, behaviors arechanged, and targeted illness outcomes are affected.Interventions that give patients information, skills,and encouragement to discuss important questionsand concerns with their physicians increase the degreeof dialogue between patient and provider and alsoimprove disease outcomes (16, 17). Systems that arededicated to improving chronic illness care can sup-port this work by making available effective educa-tional resources, skills training, and avenues for psy-chosocial support.

Good chronic illness management requires thought-ful delivery system design, which is more than simplyadding additional tasks to a system already burdenedwith work and focused on acute care. As discussedabove, usual medical practice is not designed to meetthe needs of patients with chronic illness. Practiceteams require sufficient time and explicit role defini-tion to implement and run systems to maintain regu-lar contact and prevent losses to follow-up, collectcritical data on health and disease status, meet educa-tional and psychosocial needs, and respond appropri-ately to clinical needs. Many of these managementfunctions require, and are often improved by, the del-egation of care from the physician to other profession-als, such as nurse case managers, who have the knowl-edge, time, and resources to complete the range oftasks required to manage complex chronic conditions(18). This includes time not only to assess patients butalso to optimize medical management, provideprompts and support to ensure effective self-manage-ment, and follow protocols establishing regular,

planned follow-up. Finding the time to accomplish

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this may require the adoption of innovative strategiesin the scheduling and organization of visits, such asplanned or group visits (14, 19) or telephone interac-tion with patients balanced with in-clinic visits (20,21).

Effective chronic illness management programs en-sure that providers have access to the necessary ex-pertise via decision support. Successful healthcare sys-tems use evidence-based practice guidelines or proto-cols that make provider teams aware of effectivetherapies. Such information is especially useful forprimary care providers who may be somewhat lessfamiliar than specialists about the latest techniques fortreating specific conditions. As Gruman and col-leagues (4) note, the initial diagnosis of epilepsy ismost frequently made by physicians who have littleexperience assessing and managing patients with sei-zures and who need assistance in staying current withcare refinements. In most systems, conventional refer-ral and subsequent consultation remains the majorsource of expert assistance. Referrals, however, runthe potential risk of further fragmenting care and oftendo little to improve the skills or confidence of thereferring physician. Alternative approaches to gainingspecialty input have been explored. At Group HealthCooperative, for example, a central component of thediabetes improvement program is an expert team (i.e.,a diabetologist and nurse specialist) who spend mostof their time in the primary care setting seeing difficultpatients jointly with primary care teams and educat-ing generalist providers (14). In most effective casemanagement models, the nurse regularly reviews pa-tients’ cases with a specialist or specialist team (22, 23).Such models of distributed expertise may prove to befar more cost-effective for common chronic illnessesthan the more conventional specialty care or specialtyreferral models.

Timely, useful data about individual patients andpopulations of patients with chronic conditions fromclinical information systems is a critical feature ofeffective programs, especially those that employ pop-ulation-based approaches (24). Without a list of allpatients with a condition—a registry—providers areforced to be passive, waiting for patients to present forcare. Successful strategies invite or remind patients toparticipate in care in accord with an explicit plan ofcare. Sufficiently advanced information systems caneven prompt the delivery of care in accordance withthe treatment plan when a patient presents outside ofa scheduled visit. The advantages of patient registries

were recognized long before the computerization of

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medical practice (25). Healthcare teams that have ac-cess to a registry can call in patients with specificneeds, deliver planned care, receive feedback on theirperformance, and implement reminder systems (6).Registries also facilitate the provision of feedback tothe practice. On the individual level as well, it iscritical that the system collect and use informationabout all enrollees who have epilepsy and seizures,rather than relying on either the provider’s or thepatient’s recollection of dates, severity, and other fac-tors that could influence decision making (4).

Effective chronic illness management requires thatan organized healthcare system be linked with neces-sary resources available in the broader community.The ethnic/cultural background of patients and theirrelationships with influential people in their commu-nity (clergy, elders, etc.) should be considered in de-termining potential sources of support for the patient.In addition, disease-specific support groups, such aslocal chapters of the Epilepsy Foundation, can offerpatients, their families, and caregivers advice, infor-mation, and support (4). This level of the model alsopoints out characteristics of the larger healthcare sys-tem, without which care improvement is unlikely.These characteristics include a coherent and sustainedapproach to system improvement, senior leadershipcommitted to improving clinical outcomes, and thepresence of incentives to encourage providers andpatients to adhere to guidelines and improve care.

THE CHRONIC CARE MODEL ANDREAL WORLD CHANGE

The Chronic Care Model has demonstrated its util-ity as both a descriptive tool to identify common char-acteristics of well-performing programs and as aframework on which potential new programs may bemeasured to ensure that all necessary elements arebeing considered. Currently, as part of the nationalprogram Improving Chronic Illness Care, funded byThe Robert Wood Johnson Foundation, we are en-gaged in disseminating and evaluating the model inseveral ways. Most prominently, system change incor-porating the elements of the model is the focus ofseveral clinical quality improvement efforts being con-ducted in collaboration with the Institute for Health-care Improvement (IHI). These breakthrough series(BTS), using the format developed by IHI in 1995,bring together groups of healthcare organizations that

share a commitment to making major, rapid delivery

system changes. Approximately 30 organizations areparticipating in a 12- to 13-month program involvingthree 2-day learning sessions, alternating with actionperiods at their clinical sites. We began our firstchronic illness breakthrough series in September 1998,and we have completed two, with a third underway.These series focus on diabetes, geriatric care, conges-tive heart failure, asthma, and depression. Participantshave included managed care organizations, academichealth centers, community clinics, and hospital sys-tems, with the majority of teams achieving importantimprovements in health outcomes in the targeted pop-ulation.

Some BTS participants have gone on to use the samemethods to spread system changes within their largerorganizational structure, resulting in the model beingused as a basis for organized change in more than 200healthcare systems to date. Two of the breakthroughseries are also the focus of a major independent eval-uation by a team from RAND Health, which willstudy both organizational-level and patient-level out-comes.

In addition to these breakthrough series, ImprovingChronic Illness Care is engaged in a growing numberof other similar regional collaborative efforts. Finally,the model will be used and further tested as the focusof a targeted grants program funded by The RobertWood Johnson Foundation. Due to all these efforts, inthe near future we should have an even better under-standing of the Chronic Care Model’s utility in servingas a road map for organizations needing to changetheir systems to better meet the needs of patients withchronic illnesses.

ACKNOWLEDGMENT

The national program Improving Chronic Illness Care is sup-ported by the Robert Wood Johnson Foundation, Grant 034984.

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