multiple sclerosis: disability profile and quality of life in an australian community cohort

10
Original article 87 Multiple sclerosis: disability profile and quality of life in an Australian community cohort Fary Khan a , Tracey McPhail b , Caroline Brand c , Lynne Turner-Stokes d and Trevor Kilpatrick e The objective of this study was to determine the experience of disability and reported symptoms in multiple sclerosis in an Australian community sample, comparing the perceptions of patients, carers and treating doctors, and to examine effects on quality of life, carer stress and utilization of health services. The study design used a prospective cross sectional community survey. The participants were persons with a confirmed diagnosis of multiple sclerosis, with quantified neurological, mobility and cognitive deficits, from a tertiary hospital database (n = 101), who lived at home, and their carers and doctors. The study method used demographic, diagnostic and disease severity data extracted from the database. Structured interviews conducted at home included: (1) open questionnaires for participant, carer and general practitioner, prioritizing symptoms/problems affecting daily living; and (2) standardized assessments for patient quality of life, caregiver strain and perceived burden of care. The mean age was 49 years (range 28–64). Those more severely affected had a significantly reduced quality of life and increased carer burden than those with milder disability, but discordance between patients, carers and doctors was noted in their perception of problems and symptom experience. Rates of depression (67%) and work-related problems were high, but vocational support was rarely provided. Forty persons used interferon, of whom 20 had secondary progressive multiple sclerosis; 39% reported difficulty in accessing rehabilitation services and only 10% were referred to medical rehabilitation units. In conclusion, the rates of disability and symptom experience were similar to other series; however, access and utilization of appropriate rehabilitation and support services appears to be lacking. There were higher reported rates of depression and poor quality of life. Opportunities may possibly exist to re-deploy resources to develop vocational support, counselling and rehabilitation. Anhand der vorliegenden Studie sollte die Erfahrung mit Behinderung und den gemeldeten Symptomen bei multipler Sklerose am Beispiel einer australischen Gemeinde und im Vergleich der Auffassungen von Patienten, Betreuern und behandelnden A ¨ rzten ermittelt und die Auswirkungen auf Lebensqualita ¨ t, Stress der Betreuer und Benutzung der Gesundheitsdienste untersucht werden. Dem Studienaufbau wurde eine prospektiv randomisierte Querschnittsumfrage in der Gemeinde zugrunde gelegt. Die Teilnehmer waren Personen aus einer tertia ¨ ren Krankenhaus-Datenbank (n = 101) mit diagnostizierter multipler Sklerose und quantifizierbaren neurologischen, Mobilita ¨ ts- und kognitiven Ausfa ¨ llen, die zu Hause lebten, sowie ihre Betreuer und A ¨ rzte. Die Studie bediente sich demographischer und diagnostischer Daten sowie Daten zum Schweregrad der Erkrankung, die der Datenbank entnommen wurden. Zu den strukturierten Interviews, die zu Hause durchgefu ¨ hrt wurden, za ¨ hlten: (1) offene Fragebo ¨ gen fu ¨r Teilnehmer, Betreuer und praktischen Arzt, die sich mit den Symptomen/Problemen befassen, die das ta ¨ gliche Leben erschweren; (2) Standardbeurteilungen der Lebensqualita ¨ t des Patienten, der Stresssituation und der wahrgenommenen Belastung des Betreuers. Das Durchschnittsalter der Patienten lag bei 49 Jahren (Altersspanne: 28–64 Jahre). Bei den sta ¨ rker behinderten Patienten war eine stark verminderte Lebensqualita ¨ t und eine ho ¨ here Belastung der Betreuer zu beobachten als bei den leichter Behinderten, wobei jedoch Uneinigkeiten zwischen Patienten, Betreuern und A ¨ rzten in ihrer Sichtweise der Probleme und Symptome deutlich wurden. Depressionen (67%) und Probleme im beruflichen Alltag traten ha ¨ ufig auf, im Berufsfeld dagegen erfuhren die Betroffenen jedoch selten Unterstu ¨ tzung. Von den 40 Personen, die Interferon einnahmen, hatten 20 eine sekunda ¨ r progrediente multiple Sklerose; 39% gaben Probleme bei der Benutzung von Reha-Einrichtungen an, und nur 10% wurden an medizinische Reha-Zentren verwiesen. Daraus folgt, dass der Schweregrad der Behinderung und die Symptomerfahrung sich mit anderen Versuchsreihen decken, der Zugriff auf die entsprechenden Reha- und Supportdienste und deren Benutzung jedoch mangelhaft zu sein scheint. Ein ho ¨ herer Depressionsgrad und eine schlechtere Lebensqualita ¨t wurden beobachtet. Mo ¨ glicherweise ko ¨ nnen die Ressourcen fu ¨ r die Entwicklung von Unterstu ¨ tzungsmaßnahmen am Arbeitsplatz, fu ¨ r Beratungs- und Seelsorgedienste und fu ¨r Reha-Maßnahmen neu verteilt werden. El objetivo de este estudio fue determinar las experiencias de individuos con esclerosis mu ´ ltiple en relacio ´ n con la discapacidad y los sı ´ntomas que presentan como resultado de esta enfermedad, en una comunidad australiana tomada como muestra, para lo que se comparo ´ las percepciones de los pacientes, y sus cuidadores y me ´ dicos, y se examinaron los efectos que esta afeccio ´n tiene en la calidad de vida de los pacientes, en el grado de estre ´ s de los cuidadores y en el uso de los servicios de salud. La investigacio ´ n se realizo ´ en forma de un 0342-5282 c 2006 Lippincott Williams & Wilkins Copyright © Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.

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Original article 87

Multiple sclerosis: disability profile and quality of life inan Australian community cohortFary Khana, Tracey McPhailb, Caroline Brandc, Lynne Turner-Stokesd andTrevor Kilpatricke

The objective of this study was to determine the

experience of disability and reported symptoms in multiple

sclerosis in an Australian community sample, comparing

the perceptions of patients, carers and treating doctors,

and to examine effects on quality of life, carer stress and

utilization of health services. The study design used a

prospective cross sectional community survey. The

participants were persons with a confirmed diagnosis of

multiple sclerosis, with quantified neurological, mobility

and cognitive deficits, from a tertiary hospital database

(n = 101), who lived at home, and their carers and doctors.

The study method used demographic, diagnostic and

disease severity data extracted from the database.

Structured interviews conducted at home included: (1)

open questionnaires for participant, carer and general

practitioner, prioritizing symptoms/problems affecting

daily living; and (2) standardized assessments for patient

quality of life, caregiver strain and perceived burden of

care. The mean age was 49 years (range 28–64). Those

more severely affected had a significantly reduced quality

of life and increased carer burden than those with milder

disability, but discordance between patients, carers and

doctors was noted in their perception of problems and

symptom experience. Rates of depression (67%) and

work-related problems were high, but vocational support

was rarely provided. Forty persons used interferon, of

whom 20 had secondary progressive multiple sclerosis;

39% reported difficulty in accessing rehabilitation services

and only 10% were referred to medical rehabilitation units.

In conclusion, the rates of disability and symptom

experience were similar to other series; however, access

and utilization of appropriate rehabilitation and support

services appears to be lacking. There were higher reported

rates of depression and poor quality of life. Opportunities

may possibly exist to re-deploy resources to develop

vocational support, counselling and rehabilitation.

Anhand der vorliegenden Studie sollte die Erfahrung mit

Behinderung und den gemeldeten Symptomen bei

multipler Sklerose am Beispiel einer australischen

Gemeinde und im Vergleich der Auffassungen von

Patienten, Betreuern und behandelnden Arzten ermittelt

und die Auswirkungen auf Lebensqualitat, Stress der

Betreuer und Benutzung der Gesundheitsdienste

untersucht werden. Dem Studienaufbau wurde eine

prospektiv randomisierte Querschnittsumfrage in der

Gemeinde zugrunde gelegt. Die Teilnehmer waren

Personen aus einer tertiaren Krankenhaus-Datenbank

(n = 101) mit diagnostizierter multipler Sklerose und

quantifizierbaren neurologischen, Mobilitats- und

kognitiven Ausfallen, die zu Hause lebten, sowie

ihre Betreuer und Arzte. Die Studie bediente sich

demographischer und diagnostischer Daten sowie Daten

zum Schweregrad der Erkrankung, die der Datenbank

entnommen wurden. Zu den strukturierten Interviews,

die zu Hause durchgefuhrt wurden, zahlten: (1) offene

Fragebogen fur Teilnehmer, Betreuer und praktischen Arzt,

die sich mit den Symptomen/Problemen befassen, die das

tagliche Leben erschweren; (2) Standardbeurteilungen der

Lebensqualitat des Patienten, der Stresssituation und der

wahrgenommenen Belastung des Betreuers. Das

Durchschnittsalter der Patienten lag bei 49 Jahren

(Altersspanne: 28–64 Jahre). Bei den starker behinderten

Patienten war eine stark verminderte Lebensqualitat und

eine hohere Belastung der Betreuer zu beobachten als bei

den leichter Behinderten, wobei jedoch Uneinigkeiten

zwischen Patienten, Betreuern und Arzten in ihrer

Sichtweise der Probleme und Symptome deutlich wurden.

Depressionen (67%) und Probleme im beruflichen Alltag

traten haufig auf, im Berufsfeld dagegen erfuhren die

Betroffenen jedoch selten Unterstutzung. Von den 40

Personen, die Interferon einnahmen, hatten 20 eine

sekundar progrediente multiple Sklerose; 39% gaben

Probleme bei der Benutzung von Reha-Einrichtungen an,

und nur 10% wurden an medizinische Reha-Zentren

verwiesen. Daraus folgt, dass der Schweregrad der

Behinderung und die Symptomerfahrung sich mit

anderen Versuchsreihen decken, der Zugriff auf die

entsprechenden Reha- und Supportdienste und deren

Benutzung jedoch mangelhaft zu sein scheint. Ein hoherer

Depressionsgrad und eine schlechtere Lebensqualitat

wurden beobachtet. Moglicherweise konnen die Ressourcen

fur die Entwicklung von Unterstutzungsmaßnahmen am

Arbeitsplatz, fur Beratungs- und Seelsorgedienste und fur

Reha-Maßnahmen neu verteilt werden.

El objetivo de este estudio fue determinar las experiencias

de individuos con esclerosis multiple en relacion con

la discapacidad y los sıntomas que presentan como

resultado de esta enfermedad, en una comunidad

australiana tomada como muestra, para lo que se comparo

las percepciones de los pacientes, y sus cuidadores y

medicos, y se examinaron los efectos que esta afeccion

tiene en la calidad de vida de los pacientes, en el grado de

estres de los cuidadores y en el uso de los servicios

de salud. La investigacion se realizo en forma de un

0342-5282 �c 2006 Lippincott Williams & Wilkins

Copyright © Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.

estudio transversal prospectivo. Los participantes fueron

individuos residentes en sus hogares, con diagnostico

confirmado de esclerosis multiple, y con trastornos

neurologicos, de movilidad y cognitivos cuantificados,

tomados de la base de datos de un hospital de atencion

terciaria (n = 101); ası como los cuidadores y medicos de

estos. Se emplearon datos demograficos, diagnosticos y

sobre la gravedad de la enfermedad, extraıdos de la base

de datos. Entre las entrevistas estructuradas llevadas a

cabo en el hogar figuraron: (1) cuestionarios abiertos para

los participantes, sus cuidadores y medicos de cabecera,

en los que se evaluan principalmente los sıntomas y

trastornos que afectan la vida cotidiana; (2) evaluaciones

estandarizadas de la calidad de vida del pacientes, las

tensiones a las que de los cuidadores estan sometidos y la

carga percibida que representa el cuidado de estos

individuos. La edad promedio fue de 49 anos (intervalo de

28 a 64). Los individuos mas afectados por la enfermedad

experimentaron una calidad de vida significativamente

peor que aquellos con discapacidades moderadas, pero la

discordancia entre pacientes, cuidadores y medicos se

manifesto en la percepcion que cada uno de ellos tuvo de

los problemas y sıntomas relacionados con la enfermedad.

La incidencia de depresion (67%) y de problemas

relacionados con el trabajo fue alta, pero en muy pocos

casos se brindo apoyo vocacional. Cuarenta de estos

individuos utilizaron interferon, de ellos 20 padecıan

esclerosis multiple progresiva secundaria. El 39% de los

participantes manifestaron dificultades para tener acceso

a los servicios de rehabilitacion y solo al 10% de ellos se

remitio a los servicios de rehabilitacion profesional. En

conclusion, la incidencia de discapacidades y sıntomas fue

similar a la encontrada en otros estudios; sin embargo,

el acceso a los servicios de rehabilitacion y apoyo y la

utilizacion adecuada de estos servicios parecen estar

ausentes. La incidencia de depresion y mala calidad

de vida reportadas fue mas alta en este estudio.

Probablemente existan oportunidades de redistribuir el

uso de los recursos para desarrollar servicios de apoyo

vocacional, psicoterapia y rehabilitacion.

Cette etude avait pour objectif de determiner l’experience

du handicap et les symptomes signales dans les cas de

sclerose en plaques parmi un echantillon de la collectivite

australienne, en comparant les perceptions des patients,

des aides-soignants et des medecins traitants, et en

examinant les effets de la maladie sur la qualite de la vie, le

stress pour les personnes assurant les soins et l’utilisation

des services de sante. L’etude a ete concue en utilisant une

enquete prospective couvrant toutes les sections de la

collectivite. Les participants etaient des individus dont le

diagnostic de sclerose en plaques etait confirme et

presentant des deficits neurologiques, de mobilite

et cognitifs quantifies, confirmes par les informations d’une

banque de donnees hospitaliere tertiaire (n = 101), qui

vivaient a domicile, et leurs personnes soignantes et

docteurs. La methode d’etude utilisait des donnees

demographiques, de diagnostic et de severite de la

maladie extraites de la banque de donnees. Les entretiens

structures effectues a domicile incluaient: (1) des

questionnaires ouverts pour les participants, les personnes

soignantes et les medecins generalistes, definissant la

priorite des symptomes/problemes affectant la vie

quotidienne; (2) des evaluations standardisees de qualite

de la vie du patient, de stress de la personne soignante et

de la lourdeur percue des soins. L’age moyen etait de 49

ans (fourchette 28-64). Les personnes les plus severement

affectees presentaient une reduction plus significative de

leur qualite de vie et accroissaient plus notablement la

lourdeur des soins que les patients souffrant d’un handicap

moindre, mais des desaccords entre les patients, les

personnes soignantes et les docteurs ont ete notes dans

leur perception des problemes et leur experience

des symptomes. Les taux de depression (67%) et de

problemes lies au travail etaient eleves, mais une

assistance professionnelle etait rarement fournie.

Quarante personnes utilisaient l’interferon, dont 20

patients souffrant de sclerose en plaques progressive

secondaire, 39% signalaient des difficultes d’acces aux

services de rehabilitation et seulement 10% avaient ete

envoyes vers des unites de reeducation medicale.

En conclusion, le taux de handicap et l’experience

des symptomes etait similaire aux autres series,

toutefois l’acces aux services de reeducation et de

soutien appropries et leur utilisation semble etre

deficiente. On note des taux de depression plus importants

et une mauvaise qualite de la vie. Il pourra exister

des possibilites de redeployer les ressources en vue

de developper un soutien professionnel et des services

de conseil et de reeducation. International Journal of

Rehabilitation Research 29:87–96 �c 2006 Lippincott

Williams & Wilkins.

International Journal of Rehabilitation Research 2006, 29:87–96

Keywords: carer burden, disability, Expanded Disability Status Scale,health service utilization, multiple sclerosis, quality of life, rehabilitation

aDepartment of Rehabilitation Medicine, University of Melbourne, RoyalMelbourne Hospital, Melbourne, Australia, bPeter Macallum Cancer Centre,Melbourne, Australia, cDepartment of Clinical Epidemiology, Health ServiceEvaluation Unit, Royal Melbourne Hospital, Melbourne, Australia, dKings CollegeLondon, Regional Hospital Unit, Northwick Park Hospital, London, UK andeCentre for Neuroscience, University of Melbourne, Melbourne, Australia.

Correspondence and requests for reprints to F. Khan, c/o Building 21, RoyalMelbourne Hospital, Royal Park Campus, Poplar Road, Parkville, Victoria 3052,Australia.Tel: + 61 3 8387 2178; fax: + 61 3 8387 2506;e-mail: [email protected]

Sponsorship: This study was made possible by the 2005 Research Fellowshipgrant, made available by the Royal Australasian College of Physicians and theDepartment of Medicine, University of Melbourne, Australia. The supportingsources had no involvement, control nor influenced the decision to submit thefinal manuscript.

Received 26 August 2005 Accepted 21 October 2005

88 International Journal of Rehabilitation Research 2006, Vol 29 No 2

Copyright © Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.

IntroductionMultiple sclerosis (MS) is a chronic disease of the central

nervous system associated with progressive disability and

cognitive dysfunction. It affects over 1 million young

adults worldwide, and is the third leading cause of

disability in adults between 20 and 50 years of age

(Dombovy, 1998). The prognosis is variable; 50% will

require a gait aid within 15 years of onset (Weinshenker

et al., 1989). Therefore, issues of progressive physical

disability, psychosocial adjustment, social reintegration,

financial strain, and impact on driving, work and family

occur over time (Frankel, 2001).

It has been recognized that doctors do not always

accurately estimate factors affecting health-related issues

in their patients (Slevin et al., 1988; Rothwell et al., 1997).

Patients themselves may underestimate their own care

needs (Donohoe et al., 1996) and access to community

services can bear little relationship to need (Freeman and

Thompson, 2000). The planning of appropriate services

for people with MS relies not only on epidemiological

figures for the condition itself, but also requires a good

understanding of the needs and priorities of the local MS

population.

There are at least 15 000 persons with MS in Australia

(MS Society Australia, 2005). MS is not a notifiable

disease so the actual figure is likely to be higher. The

prevalence of MS (per 100 000 people) has been

estimated at 40–80 in Victoria and Hobart, and 30–35 in

Perth and Newcastle (Hammond et al., 1988). Improved

physician awareness and imaging facilities (Stenager et al.,1991; Sadovnik and Ebers, 1993), and increase in MS

prevalence with age, will impact on health services due to

increased functional disability, as well as aging. However,

an extensive literature search revealed no published

Australian data on the prevalence of symptom and

disability profile in persons with MS, their access to

health care, carer burden or quality of life. Results from

other studies (Aronson et al., 1996; Stolp-Smith et al.,1998; Gottberg et al., 2002) cannot be extrapolated to

Australian conditions due to differences in healthcare and

rehabilitation services.

The aim of this study was therefore to document

disability, symptom experience and quality of life in an

Australian community-based sample of MS patients, and

to relate these to the severity and stage of disease. We

were also interested in comparing the perceptions of the

individuals, their carers and treating doctors, regarding

the priority of different symptoms and problems, and the

extent to which these impact on their daily living. Finally

we wished to ascertain their access to, and use of,

different services and to make recommendations for

future development of services to meet identified

priorities.

MethodsParticipants and setting

A community-based MS group was selected for this study,

who could ‘reliably’ report the main problems of living

with MS. The selection criteria included the recruitment

of younger persons with a confirmed diagnosis of MS,

made by a research neurologist based on Poser’s criteria

(Poser et al., 1983), and cerebral MRI findings consistent

with MS according to Paty’s criteria (Paty et al., 1988).

These persons were residing in their homes, were still

active in the community, and had known limitations in

neurological status, mobility and cognition, based on

Kurtzke’s Functional Systems (KFS) and Expanded

Disability Status Scale (EDSS) (Kurtzke, 1983). Partici-

pants needed to live within a feasible distance for home

interviews. Those who were bed bound and/or institu-

tionalized were excluded. Participant selection criteria

are listed in Table 1.

Participants were ascertained from the MS database held

at the Royal Melbourne Hospital (RMH), a large tertiary

referral centre in Victoria, Australia. Participants were

recruited through the MS Society as well as public and

private neurology clinics. Patient demographic data,

details of diagnosis (using Poser and Paty criteria) and

category per EDSS levels were entered in the database

after assessment by one of five neurologists with a

subspeciality interest in MS.

The severity of MS was determined by assigning a score

for each of the seven KFS (pyramidal, cerebellar,

brainstem, sensory, bowel and bladder, visual, cerebral)

and a single unifying score of the EDSS (Kurtzke, 1983),

quantifying disability from the seven functional system

scores. EDSS is a 20-step scale (using half steps) ranging

from 0 = normal to 10 = death due to MS.

Participant recruitment is outlined in Fig. 1. At the time of

recruitment for this study there were 1023 patients listed

on the RMH MS Database. Of these, 204 patients (20% of

the total sample) were identified as being eligible for this

study, based on a definite diagnosis of MS made by a

neurologist (subspecialty MS) using Poser and Paty criteria,

residing in their homes in the community within a 60-km

radius of metropolitan Melbourne. All were contacted by

mail and invited to participate in the project. The 104 who

replied affirmatively, and returned consent forms, were

telephoned by the primary researcher (F.K.) to explain the

study further and organize the interview appointment.

Their nominated preferred primary treating doctors were

then contacted by mail.

Recruitment and all interviews were undertaken between

December 2004 and February 2005. Twelve interviews

were conducted by the primary author (F.K.) and 92

(88.5%) were assessed by an independent trained

Multiple sclerosis: disability profile in an Australian community cohort Khan et al. 89

Copyright © Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.

research assistant. Each participant was interviewed at

their home using a structured format. They completed an

open ended questionnaire (see below) and the Assess-

ment of Quality of Life (AQoL) questionnaire

(Hawthorne and Osborne, 2005). Interviews took ap-

proximately 1.5 h and appropriate rest breaks were

provided. The research assistant (and F.K.) provided

assistance for participants who had difficulty with

completing the questionnaires.

Twenty-four participants lived alone and had no carers.

Sixty-nine agreed to have their carers interviewed during

the same visit (Fig. 1) and completed their open-ended

questionnaire, the Care giver strain index (CSI) (Robinson,

1983) and Carer perceived burden, using the Visual

Analogue Scale (VAS) scored in mm along a 10-cm line

(score range 0–100). If concurrent carer interviews were not

possible, the two questionnaires were left for completion

and returned by post. The researchers also contacted (mail

and telephone) the patient’s treating medical practitioner or

neurologist to complete and return their open questionnaire

form.

Measurements

The following diagnostic information was obtained from

the RMH database:

(1) MS diagnosis.

(2) Stage of disease – classified as relapsing remitting

(RR), secondary progressive (SP) or primary

progressive (PP).

(3) EDSS scores.

Disease course, diagnosis and severity of MS symptoms

(EDSS scores) were confirmed by the treating neuro-

logists. Participants were divided into three groups:

mild (EDSS 0–3), moderate (EDSS 3.5–6) and severe

(EDSS 6.5–8.0).

Other information collected during the structured inter-

view included:

(1) Demographic data, including living arrangements,

work, driving and pension status.

(2) Medical history, medication use and relapses within

last 2 years. Relapse was defined as progressive and

persistent worsening of MS symptoms beyond 48 h

requiring hospitalization.

(3) Access to health and social care: the number and

frequency of visits annually to general practitioners or

specialists, allied health staff and others.

Questionnaires

Open self-report questionnaires were used for MS partici-

pants, their carers and treating medical practitioners, to gain

first-hand information about problems due to MS, without

prompting, using checklists or suggesting expected specific

problems. They were asked to list and prioritize up to a

maximum of 10 problems. Questionnaires were standar-

dized and designed to be similar in format to give parallel

perspectives from all three groups (questionnaires available

upon request from authors). If participants were not sure,

the interviewers asked them to outline the most pressing

problems they faced in everyday life. Carers and medical

practitioners were prompted to prioritize the problems they

identified in the participants.

The various symptoms, impairments and problems

identified by all three groups were categorized themati-

cally under major disability headings, then clarified and

confirmed with carers and medical practitioners. They

were listed in terms of importance under the following

headings: fatigue, mobility (weakness, spasticity), con-

tinence (bladder/bowel), depression, cognition, psycho-

social, pain, sexuality, work, transport and other (vision).

This study was approved by the University of Melbourne

and the RMH, Human Research and Ethics Committees.

Statistical analysis

All data were from a single centre and entered by a single

researcher (T.M). Statistics were calculated using SPSS

11.0 for Windows (SPSS, Chicago, Illinois, USA).

Results are described by mean and SD for continuous

non-skewed data, as median and interquartile range

(IQR) for continuous skewed data (as defined by

kurtosis > 2), and as frequency (%) for categorical data.

One-way ANOVA were used to evaluate statistically

significance differences between the three groups of

condition severity (defined by EDSS). Statistical sig-

nificance was determined by an a level of 0.05. AQoL

utility scores were calculated using SPSS according to

guidelines (Hawthorne and Osborne, 2005).

Table 1 Patient selection criteria

Inclusion criteriaAged 18–64 years (male and female patients)Diagnosis of clinically or laboratory-supported definite multiple sclerosis,confirmed by a neurologist according to Poser’s criteriaa and cerebral magneticresonance imaging findings as per Paty’s criteriab

Multiple sclerosis diagnosed a minimum of 2.5 years agoParticipants residing in their homesParticipants with documented neurological deficits based on Kurtzke’sFunctional Systems and Expanded Disability Status Scalec between 2 and 7.5for mobility, and between 0 and 2 for cognitive impairmentAble and willing to give informed consentLiving in metropolitan and greater Melbourne (within 60 km radius)

Exclusion criteriaSevere cognitive issues (Kurtzke’s Functional Systems cognitiongreater than 2)Exacerbation of multile sclerosis in the 3 months prior to recruitmentfor the studyInstitutionalized and bed-bound patients

aPoser et al. (1983).bPaty et al. (1988).cKurtzke (1983).

90 International Journal of Rehabilitation Research 2006, Vol 29 No 2

Copyright © Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.

ResultsThe demographic characteristics of the sample are shown

in Table 2. The mean age was 49.5 years (SD 9.2),

female:male ratio approximately 3:1 and there was a mean

of 9 years since diagnosis. Only one-third (35%) were

still working full-time and almost half of those partici-

pants who were employed at the time of diagnosis had

modified their working hours, altered duties to lighter

work or stopped work. The main reasons for giving up

work were fatigue, mobility issues (difficulty in accessing

workplace and transport) and continence. Two-thirds

(63%) were still driving and only 11% had car modifica-

tions (e.g. spinner knob, adjusted brakes).

Table 3 lists the disease characteristics, functional

ability and treatment, categorized by stage of disease.

Two-thirds of the sample reported depression

(67%) and a third (32%) were taking antidepressant

medication.

Forty (40%) used interferon. An unexpected finding

was that 20 (39%) of these had secondary progressive MS,

with an average use of interferon of 8 years. This is

contrary to current authority Pharmaceutical Benefit

Scheme (PBS) guidelines (PBS, 2005), although some

participants reported that they believed the treatment to

be of benefit to them.

Fig. 1

MS database at RMH (n=1023)

Patients met study criteria and invited to participate (n=204)

Participants consented to participate and interviewed (n=101)

Of those not participating:

• 89 failed to respond • 2 declined to participate • 2 responded after analysis

was complete • 5 were unavailable (away) • 3 were excluded due to acute

exacerbation • 2 relocated to another state

Carers interviewed (n=69)

• 321 patients had incomplete information at the time of study

• 204 fulfilled all study criteria • 203 did not have a confirmed

diagnosis of MS as per Paty criteria.

• 161 were unlikely to have definite MS

• 105 were non-ambulant• 25 were excluded (residence too

distant)• 4 were deceased

Of participants with carers: • 6 participants did not want

their carer to be interviewed • 2 carers were not available • 24 lived alone (no carers)

General practitioners responded by mail/fax (n=39)

Of 101 general practitioners contacted:

• 10 had not seen patient in more than 12 months

• 7 were not contactable • 45 failed to respond

Flow chart of recruitment process. MS, multiple sclerosis; RMH, Royal Melbourne Hospital.

Multiple sclerosis: disability profile in an Australian community cohort Khan et al. 91

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Comparison of the perceptions of participants, carers and

their doctors was limited by a lack of responses from the

doctors, despite requests for information. Parallel infor-

mation is only available in a subset of 29. However, in this

group, open-ended questionnaires revealed discordance

between participants, carers and their doctors in their

reported perceptions of the main issues (see Table 4).

Participants most frequently reported fatigue, mobility

and continence problems. Their carers reported these

less frequently, but highlighted mood and psychosocial

issues more often than did the participants themselves.

Doctors reported mobility, continence, mood and psycho-

social issues, but less commonly noted pain problems, and

none reported sexuality issues. Interestingly, the carer

report of vision, incontinence, memory and cognitive

deficits is much lower than participants and doctors. The

ability of participants to detect depression reduced as the

disease became more severe.

Table 5 shows the main issues reported by the

participants classified by disease severity (EDSS group).

Fatigue mobility and continence issues were common

across the board. Problems with memory and mood were

most frequently reported in the milder group, whilst

sexuality and psychosocial issues were more commonly

identified in the moderate group. Work issues were

reported most frequently in the group with moderate to

severe disability.

MS participants reported low overall life quality on AQoL

utility scores. The mean score in this group was 0.46 (SD

0.25), which is much lower than 0.83 (SD 0.20) for normal

healthy Australian population (Hawthorne and Osborne,

2005). Table 6 shows the quality of life scores in the five

domains of the AQoL, categorized by disease severity

(EDSS group). There was a significant relationship

between disease severity and total quality of life score –

in this study P < 0.001, with the main differential impact

being in the domains of ‘illness’ and ‘independent living’.

Although there was a trend towards increased strain

among carers (CSI) for the more disabled group of

patients, this did not reach significance. However,

Table 2 Characteristics of MS participants

Variable Average/frequency

Age [mean ± SD (range)] 49.50 ± 9.19 (28–64)Male 49.56 ± 9.11 (28–64)Female 49.38 ± 9.56 (29–61)

Sex [n (%)]Male 29 (28.7)Female 72 (71.3)

Living [n (%)]Alone 24 (23.8)Family 71 (70.3)Other 6 (5.9)

Working [n (%)]Retired/unemployed 60 (59.4)Working full-time (36 h/week) 35 (34.7)Working part-time (20 h/week) 6 (5.9)

Pension [n (%)]No 47 (46.5)Yes 54 (53.5)

Driving [n (%)]Yes 64 (63.4)No 37 (36.6)Vehicle modification 7 (10.9)

Country of birth [n (%)]a

Australia 74 (74.0)Other 26 (26.0)

aThe country of birth was unknown for one participant.

Table 3 Multiple sclerosis features by stage of disease

Total (n = 101) Stage of disease

Relapsing remitting (n = 29) Secondary progressive (n = 51) Primary progressive (n = 14)

Kurtzke functional system[median/mode (range)]Pyramidal (0–6) 3/3 (0–5) 3/3 (0–4) 3/3 (0–5) 3/3 (0–5)Cerebellar (0–5) 2/2 (0–4) 1/2 (0–3) 2/2 (0–4) 2/2 (0–4)Brainstem (0–5) 1/1 (0–4) 0/0 (0–3) 1/1 (0–4) 1/1 (0–3)Sensory (0–6) 2/2 (0–4) 2/2 (0–4) 2/2 (0–4) 2/2 (0–3)Bowel and bladder (0–6) 2/2 (0–6) 1/1 (0–4) 2/2 (0–6) 1/1 (0–4)Cerebral (0–5) 0/0 (0–3) 0/0 (0–2) 1/0 (1–3) 0/0 (0–2)Visual (0–6) 1/0 (0–5) 0/0 (0–5) 1/0 (1–4) 0/0 (0–3)

EDSS (mean ± SD) 4.86 ± 1.51 3.73 ± 0.94 5.40 ± 1.49 5.07 ± 1.3110-m walk [median (IQR)] 9.5 (7.1–13.7) 11.5 (9.5–14.3) 6.9 (5.7–8.0) 10.0 (8.8–14.0)Time since onset of symptoms

[median (IQR)]9.0 (5.0–14.75) 7.0 (3.0–12.25) 11.5 (5.0–16.5) 8.0 (7.0–14.0)

Months since last relapse[median (IQR)]

8.3 (3.2–26.5) 7.9 (2.7–20.3) 8.2 (3.6–26.5) 29.5 (2.3–51.9)

Depression [n (% of group)] 68 (67) 22 (73) 41 (72) 5 (36)Medications [n (% of group)]

Interferon 40 (40) 14 (47) 22 (39) 4 (29)Methotrexate 2 (2) 0 (0) 1 (2) 1 (7)Mitoxantrone 7 (7) 2 (7) 5 (9) 0 (0)Baclofen 22 (22) 0 (0) 18 (32) 4 (29)Antidepressant 32 (32) 8 (27) 22 (39) 2 (14)Ditropan 20 (20) 3 (10) 15 (26) 2 (14)

IQR, interquartile range.

92 International Journal of Rehabilitation Research 2006, Vol 29 No 2

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perceived carer burden was markedly increased in the

severely disabled group, as compared with the mild and

moderate groups (P < 0.01).

Table 7 shows access and utilization of available health

and social services in the community. The average annual

number of health and social service visits was 51.6 (SD

96). Less than 10% of participants had been formally

referred to medical rehabilitation units and 39% reported

difficulty accessing rehabilitation intervention for MS

due to lack of services or information about how to access

them. Eight (8.1%) participants were visiting practi-

tioners of complementary medicine and using various

‘tonics’. The average number of annual visits to

allied health staff (physiotherapy, occupational therapy

or speech services) was 11 (often coordinated by

the MS society, Victoria) and, of these, about 2% of

participants self-funded private physiotherapy (gym

program, fitness instructor). The average number

of visits by services (personal care, home help)

organized through the local council and MS society was

35 per year.

Table 8 outlines the type of service utilized by the MS

participants, categorized by severity. Overall, 35 regularly

received physiotherapy, and 27 had home help through

the local council and MS society, mainly amongst the

moderately affected individuals. Paradoxically the most

severe category of MS participants received the least

services; they were cared for by their carers and family,

and none attended a day centre. From the low utilization

rates there appears to be inadequate usage of existing

services across the board, particularly in the most severely

affected group.

DiscussionThe mean participant age, gender, time since diagnosis,

distribution of type, severity of disease (based on EDSS)

and disability in this group were similar to those reported

by others (Mathews et al., 1985; Kraft et al., 1986; Monks

and Robinson, 1989; Cockerill and Warren, 1990;

Sadovnick and Ebers, 1993; Aronson et al., 1996; Gottberg

et al., 2002). The participants represented a broad range

of disability and disease severity, with demographic and

diagnostic characteristics typical of MS (Weinshenker

et al., 1989). The problems reported have a clear impact

on quality of life, which was much lower in these MS

participants than in the normal Australian population.

In this study, two-thirds of the participants reported

depression, which is much higher than the 36% reported

by Janssens et al. (2003). Work-related problems were

common and in keeping with other studies (Kraft et al.,1986; Warren et al., 1986; Aronson et al., 1996). Gronning

et al. (1990) reported 16 years ago that approximately

50–80% of MS patients are unemployed within 10 years

of disease onset. Services do not seem to have improved

much since then; almost none of this series reported

having received specific interventions to support vocation

or to lessen the impact of unemployment.

Table 4 Main issues for multiple sclerosis patients, as reported by patient, carer and general practitioner

Total group For subgroup of 29

Patient (n = 101) Carer (n = 69) General practi-tioner (n = 39)

Patient Carer General practitioner

n % n % n % n % n % n %

Fatigue 82 81.2 32 46.4 19 48.7 24 82.8 11 37.9 15 51.7Mobility 80 79.2 32 46.4 31 79.5 21 72.4 23 79.3 23 79.3Bladder/bowel problems 61 60.4 17 24.6 14 35.9 20 69.0 6 20.7 10 34.5Memory/cognition 24 23.8 9 13.0 15 38.5 6 20.7 4 13.8 10 34.5Sexuality 16 15.8 12 17.4 0 0.0 8 27.6 8 27.6 0 0.0Work 16 15.8 6 8.7 2 5.1 6 20.7 3 10.3 1 3.4Vision 15 14.9 6 8.7 6 15.4 3 10.3 1 3.4 5 17.2Depression/anxiety/

emotional lability15 14.9 32 46.4 16 41.0 4 13.8 13 44.8 11 37.9

Psychosociala 13 12.9 24 34.8 11 28.2 3 10.3 13 44.8 8 27.6Pain 12 11.9 9 13.0 2 5.1 2 6.9 5 17.2 2 6.9Transportb 5 5.0 4 5.8 0 0.0 2 6.9 1 3.4 0 0.0

aPsychosocial problems: marital problems, lack of social activities.bTransport problems include inability to drive, lack of access to transport.

Table 5 Main issues reported by participants classified by diseaseseverity

Expanded disability status scale

Level 1 (0–3)n = 19 [n (%)]

Level 2 (3.5–6)n = 60 [n (%)]

Level 3 (6.5–8)n = 22 [n (%)]

Fatigue 17 (89.5) 48 (80.0) 17 (77.3)Mobility 13 (68.4) 46 (76.7) 21 (95.5)Pain 2 (10.5) 8 (13.3) 2 (9.1)Bladder/bowel 9 (47.4) 37 (61.7) 15 (68.2)Depression 8 (42.1) 7 (11.7) 0 (0.0)Sexuality 3 (15.8) 12 (20.0) 1 (4.5)Psychosocial 1 (5.3) 10 (16.7) 2 (9.1)Work 1 (5.3) 11 (18.3) 4 (18.2)Transport 1 (5.3) 3 (5.0) 1 (4.5)Memory 6 (31.6) 15 (25.0) 3 (13.6)Vision 3 (15.8) 11 (18.3) 1 (4.5)

Multiple sclerosis: disability profile in an Australian community cohort Khan et al. 93

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In the subgroup where simultaneous reporting was available

from participants, carers and their doctors, we noted

discordance in the reported problems, which has implica-

tions for disability management, provision of care, and the

transfer of knowledge and information between them. The

participants themselves appear less able to report depres-

sion as their disease progresses, similar to findings from

Janssens et al. (2003). The data suggest that while doctors

are aware of physical, cognitive and psychosocial problems,

they underestimate the issues of pain, incontinence and

sexuality. It is possible that many patients do not volunteer

this information, and that its inclusion in routine enquiries

might help to encourage reporting and thus the facilitation

of appropriate intervention.

Carers report more strain with increasing disability due to

MS and identify factors similar to previous studies:

demands on their time, confinement to home, financial

and physical strain (O’Brien, 1993), limitation in activ-

ities (Given et al., 1992), as well as feelings of pessimism,

tiredness and worry about the future (Knight et al., 1997).

Carer strain is therefore partly predictable and may be

amenable to prevention or reduction with appropriately

directed health care resources (Freeman et al., 1999).

Many disabilities in MS (mobility, incontinence, psycho-

social problems) are amenable to rehabilitation treatment

(Kraft and Cui, 2005). Rehabilitation does not reverse the

disease condition, but improves self-performance and

independence by easing the burden of symptoms,

improving participation in social activities and general

well-being (Kesselring, 2004). Despite the progressive

nature of MS, gains made by patients in rehabilitation,

such as improved function, emotional well-being and

QoL, are maintained up to 12 months (Freeman et al.,1999).

Participants (39%) reported difficulty in accessing

rehabilitation services due to either a lack of service

provision or inadequate information about how to access

them. Many severely disabled persons were not in contact

with a nurse or therapist, and the burden of care fell onto

the family and unpaid carers; a similar situation to that

reported in the UK (McLellan et al., 1989; Freeman and

Thompson, 2000). Previous reports have shown a great

deal of variation in referral rates for MS care in the

community (Freeman and Thompson, 2000). It is

essential to prevent inconsistencies in community care

when there is a shift towards earlier discharge from

hospital to comprehensive community care. Only 10% of

our series had received access to formal rehabilitation,

compared with 23% in the series from Stockholm

(Gottberg et al., 2002). This is particularly disappointing,

since access and utilization of medical services in

Australia is universal (through Medicare), and should

not therefore be affected by socioeconomic status.

Service access, and availability, needs to be improved.

Ascertainment bias could also result in an underestima-

tion of the unmet needs of community based persons

with MS.

Inadequate service provision has been reported in a range

of neurological conditions including MS (McLellan et al.,1989; Freeman and Thompson, 2000). There is limited

information regarding how health authorities allocate

funds for persons with MS in our community, especially

those accessing public hospital and community-based

programs, such as rehabilitation (other than through the

MS societies). It is unclear whether the allocation is

related to the size or demography of area they service, or

whether they are based on need for services. Meeting

patient service needs requires a flexible management

strategy to meet a particular patient’s needs (Robinson

Table 6 Total and subscale utility scores (mean ± SD) for AQoL by EDSS level

EDSS level 1 (n = 18) EDSS level 2 (n = 70) EDSS level 3 (n = 9) All EDSS levels ANOVA

Illness 0.66 ± 0.32 0.51 ± 0.26 0.33 ± 0.20 0.50 ± 0.28 F (2,94) = 8.45**

Independent living 0.82 ± 0.19 0.73 ± 0.21 0.50 ± 0.27 0.69 ± 0.26 F (2,94) = 11.53**

Social relationships 0.82 ± 0.20 0.77 ± 0.20 0.64 ± 0.24 0.75 ± 0.22 F (2,94) = 4.14*

Physical senses 0.91 ± 0.08 0.93 ± 0.07 0.93 ± 0.07 0.93 ± 0.07 F (2,94) = 0.44Psych well being 0.84 ± 0.12 0.84 ± 0.16 0.81 ± 0.19 0.83 ± 0.16 F (2,94) = 0.35Total AQoL 0.56 ± 0.26 0.49 ± 0.23 0.28 ± 0.21 0.46 ± 0.25 F (2,94) = 9.22**

*P = 0.006.**P < 0.001.AQoL, Assessment of Quality of Life; EDSS, Expanded Disability Status Scale.Note: AQoL utility scores show the degree of health of the group being studied, where a utility of 1.0 is equal to ‘good health’ and 0.0 is equal to death. An Australianstudy (Hawthorne and Osborne, 2005), assessing AQoL in a normal, healthy sample, showed a mean AQoL utility score of 0.83 ± 0.20 (95% confidence interval ± SEM:0.82–0.84).

Table 7 Access and utilization of health and social services in thecommunity

Average visits per year

Mean care visits (n ± SD) 51.6 ± 96.3Visits to GP (n) 6.5Visits to specialist (rehabilitation, neurologist,urologist) (n)

3.1

Visits to allied health (physiotherapist,occupational or speech therapist) (n)

11.0

Visits of other social services (home help,personal carer) (n)

34.3

Complementary/alternative therapist (n) 16.0

94 International Journal of Rehabilitation Research 2006, Vol 29 No 2

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et al., 1996; Freeman and Thompson, 2000). The current

clinical consensus is that, at a minimum, regular review is

essential in progressive deteriorating conditions such as

MS to prevent unnecessary secondary complications

(Compston et al., 1993; Freeman and Thompson, 2000).

An unexpected finding was that a number of patients

with seondary progressive MS were taking interferon,

which is currently outside the current PBS guidelines

(PBS, 2005). The cost of beta-interferon is, on average,

A$12 000 per patient per year. The reason for the

continued use of interferon in this context is complex

and was not investigated here. However, a number of

factors may be contributing to prescriptions issued

outside the guidelines. It may reflect the belief on the

part of the prescribing clinician that interferon use in

MSSP is effective in this context (Kappos, 1998). It may

be unintentional prescribing, where repeat prescriptions

have continued to be issued because the doctor is

unaware of the exact point of progression to MSSP.

Alternatively, it may reflect the desperation of the

treating clinician to do something for a distressed patient

and, in the absence of more appropriate and accessible

services, prescription may seem the only option.

On the other hand, PBS guidelines appear tight, but

there are grounds for uncertainty. A significant proportion

of MSSP patients may still have relapses and if interferon

reduces these it may induce stability. For continued

prescriptions, patient stability should therefore be

defined further. There is currently insufficient evidence

to routinely prescribe interferon in the MSSP group

(Taylor et al., 2002). For a patient with ongoing relapses

and emergent SP disease the situation is far less clear-cut

and needs further debate. At present, there is limited

information regarding alternate efficacious treatment for

the MSSP group. There is the potential to develop other

appropriate services, such as vocational support, counsel-

ling and rehabilitation, as well as better information about

how to access them.

Study limitations

This is a cross-sectional survey and does not provide

longitudinal information. It includes only participants

who meet fairly strict inclusion criteria, who are listed on

a database of people with MS held at the RMH and who

have agreed to participate in research projects. The

collection of self-report data from patients with cognitive

problems, especially those with EDSS scores between 6.5

and 7.5, is challenging. However, we considered it

important to include these persons, who may have very

different problems and symptom experience to those less

severely affected. In an attempt to reduce recall bias, all

questions were limited, in the main, to the current

situation. Wherever possible and appropriate, carers were

invited to validate reports; however, they were not always

available. We had hoped to gather parallel data from

participants and the treating doctor in all cases, but the

response rate from the latter group was disappointing low

and these data therefore must be treated with caution.

ConclusionOur study demonstrated that this Australian community-

based sample of patients with MS has comparable

reported rates of disability and symptom experience to

those found in international studies. There appears to be

a low level of access to and utilization of appropriate

rehabilitation and support services, which needs further

explanation, and which may contribute to the unusually

high reported rates of depression. Additional methods of

optimizing access to interventions such as counselling,

rehabilitation and vocational support needs, and the

resolution of the applicability of interferon in MSSP, is

necessary.

Table 8 Type of service currently being received, by disease severity

Service type Patients utilizing services(n)

EDSS [mean ± SD(range)]

EDSS group (n)

Mild Moderate Severe

TherapiesPhysiotherapy 35 5.41 ± 1.47 (3–8) 3 26 4Occupational therapy 8 4.63 ± 1.92 (3–8) 4 3 1Psychology/psychiatry 4 4.00 ± 1.41 (3–6) 2 2 0Speech therapy 2 8.00 ± 0.00 0 0 2Podiatry 2 5.00 ± 2.12 (4–7) 0 2 0Acupuncture 3 4.83 ± 2.36 (3–8) 1 1 1Chiropractor 4 5.50 ± 2.35 (3–8) 1 1 2Continence care 4 3.88 ± 1.44 (3–6) 2 2 0

Complementary therapiesMassage 4 6.50 ± 0 0 4 0Osteopath 3 4.00 ± 0.87 (4–5) 0 3 0

Extended activities of daily livingPersonal care attendant 8 5.37 ± 1.79 (3–8) 2 4 2Home help 27 5.04 ± 1.41 (3–8) 5 22 0Gardening 4 5.00 ± 1.16 (4–6) 0 4 0

EDSS, Expanded Disability Status Scale.

Multiple sclerosis: disability profile in an Australian community cohort Khan et al. 95

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AcknowledgementsWe would like to thank all our participants with MS, their

carers and treating medical practitioners for their

assistance and cooperation. Ms L. Spooner and C. Paros

for data collection and interviews, M. Tanner and

J. Eckholdt for their assistance with the RMH database,

and Drs L. McDonald and P. Disler for their advice in

planning this study.

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