Disability, disease duration, and rehabilitation service needs in multiple sclerosis: Patient perspectives

164

Disability, Disease Duration, and Rehabilitation Service Needs in Multiple Sclerosis: Patient Perspectives

ABSTRACT. lit-aft GH, Freal JE, Cot-yell JR: Disability. disease duration. and rehabilitation service needs in multiple sclerosis: patient perspectives. Arch Phys Med Rehabil 67:164-168. 1986. l The purpose of this study was to determine the medical, psychologic. social, and vocational needs of individuals with multiple sclerosis (MS) and to evaluate these needs with respect to age. disease duration, sex, and disability level. Individuals with MS in western Washington state were asked to participate by responding to a mailed questionnaire. Six hundred fifty-six completed the questionnaire of more than 250 variables covering symptoms, diagnosis, adjustment, service use and need, employment history. activities of daily living, and demographic characteristics. Significant patterns of service use and service need were found in this population. Medical needs, with the exception of bladder management and physical therapy, appeared well met. However, counseling and vocational needs appeared less well met. The perceived need for most medical and community services was correlated with increasing disability as might be expected. However. the need for vocational and psychologic services was not related to the level of disability but to the age of the patients and the recencv of MS diagnosis.

Rehabilitation of individuals with multiple sclerosis (MS) presents many difficulties. Not only may neurologic damage in MS affect many physical and mental functions but. in contrast to most other disabilities, MS is often progressively disabling. Many studies have evaluated MS signs, symptoms, and disease cvurse.‘~~~s~‘~~‘i~‘~~‘7~‘XHowever, comparatively few have examined the perspectives of individuals with MS.z.4.‘u Since the success of rehabilitation in MS is often as dependent on patient attitudes as on specific therapeutic methods. it is important to study these and to relate these perspectives to disease-dependent variables such as disability levels and disease duration. We also hoped to overcome shortcoming of previous social and psychologic studies of MS (especially those prior to 1960) which either evaluate MS patients of widely varying disability levels as one group or evaluate only specific subpopulations (eg. hospitalized individuals). The purpose of this study was to identify the major health. social service. and rehabilitation needs of a large population of persons with MS. This was done through a mailed survey. Questions on MS symptoms were asked to confirm the diagnosis of MS. The needs of the population of individuals who indicated appropriate symptoms were evaluated with respect to disease duration and level of disability in order to determine whether them was a pattern of service need based on these disease-related variables. The study found that there were significant statistical relationships between disease-related measurements and rehabilitation services needs within the population of individuals with MS.

The study sample of 656 individuals was obtained by having third parties, (National MS Society chapters. a local MS association. hospitals. and an epidemiologic study) contact their Arch Phys Med Rehabil Vol67,

March 1966

MS patients by mail and ask them to participate in a study 01 rehabilitation service needs. Subjects who indicated their willingness to participate were sent the study questionnaire. Marc than 90% of this gnup completed and returned the questionnaires. Because of the method of third party contact and hccuuse subjects could have been contacted by more than one third party. it was not passiblc to ascertain directly the response rate of the population. However. we estimated that between 37% and 36% of individuals with MS living in western Washington state participated in the study. Several persons were not included because their responses to the MS symptoms questions were incompatible (cg. no neurologic symptoms) with the diagnosis of MS. Classifying subjects as to definite. probable. or possible MS diagnosis was not attempted. At a minimum all sul~jccts in the study sample reported a physician’s diagnosis of MS. The main survey instrument was an eight-page. sclf-administered questionnaire. Questions covered the diagnosis of MS. current symptoms. medical and social services. vocational changes and plans. and some personal information about each of the respondents. Questions on onset and diagnostic aymptoms wet-c the product of initial interviews with MS clinic patients. The questionnaire itself was not pretcstcd. although many of its questions were taken from a pretested questionnaire on the comprehensive needs of individuals with severe disabilities. The questionnaire was a mixture of yes/no. multiple choice. and open-ended questions. More than 30 variables were collected on each subject.

PATIENT PERSPECTIVESIN MULTIPLE SCLEROSIS,Kraft AGE

OlSTRlf3UTlON

165

Table 1: Percentage of Subjects Reporting Specific

Symptoms No ADL dittkulty

With ADL difficulty

Total

Fatigue

21

56

17

Balance problems

24

50

14

Weakness or paralysis

18

45

63

39

24

63

Bladder problems

25

34

59

Increased muscle tension (spasticity)

23

26

49

Bowel problems

19

20

39

Difficulty

21

16

37

Symptom present

Numbness, tingling, sensory disturbance

’

<25

25-29 3034

35-39 40-44 45-49 W-54 55-59 60-64 Age groups (years 1

Fig l-Age

65-69

70+

distribution of study sample.

Responses on each questionnaire were checked twice, the first time by a member of the project staff familiar with MS signs and symptoms. During this check a probable course type as previously described12 was assigned to each case on the basis of symptoms and their pattern of occurrence as described by the respondent. The second check was done to insure maximum completeness before data entry. The data were then entered for computer analysis and analyzed with the aid of the SPSS, version 8.0 computer software package. l6

RESULTS In this sample of 656 individuals 29% were male, and 7 I % were female. Age distribution (fig 1) and disease duration (fig 2) for the study sample were determined. We decided to calculate disease duration from the date of diagnosis rather than the onset of symptoms because the number of years between the onset of symptoms (as reported by the subjects) and the medical diagnosis varied greatly from subject to subject. The five most prevalent symptoms, in decreasing order of frequency, were fatigue, balance problems, weakness, sensory disturbances, and bladder dysfunction (table 1). Visual disturbances were the symptoms most likely to remit. As a convenient summary of the level of physical disability, subjects were asked to rate their level of mobility (table 2). If

30 1

N=656

MS SURVEY DURATION OF DISEASE

Durotion

Fig %-Years

groups (years since diognosisl

since diagnosis of multiple sclerosis in study population.

or other

remembering

Depression

18

18

36

Pain

15

21

36

Laugh or cry easily (emotional lability)

24

8

32

Double or blurred vision, partial or complete blindness

14

16

30

Shaking (tremor)

14

13

21

Speech and/or communication difficulties

12

11

23

Difficulty

12

9

21

solving problems

there were a change in symptoms recently, a subject was asked to wait until stabilization before completing the rating. This scale8y’t was used in subsequent analysis of service needs. The principal advantages of this unambiguous scale are its simplicity to administer, its directionality or rank ordering, and its ability to measure-at least indirectly-the combined effects of fatigue, balance problems and weakness (the three most common symptoms) as well as tremor and spasticity. Chief disadvantages of the mobility scale are that it can not assess all disabilities produced by MS and that it is probably not sensitive enough to measure the subtle changes which might need to be measured in therapeutic trials or specific clinical programs. Although some subjects were subsequently tested with the “Minimal Record of Disability” it was not used in this study. l4 Subjects reported their service use patterns and perceived service needs (tables 3, 4, 5, 6). Correlations were based on Kendal’s tau statistic @
PATIENT PERSPECTIVES IN MULTIPLE SCLEROSIS, Kraft Table 2: Mobility Levels of Population

I

2

% of population

have no restriction on activities of normal employment or domestic life. but 1 am not necessarily symptom-free.

25

I

I amable to walk on level surfaces using no aids for short distances only (for about 15 minutes) before must stop or rest.

I6

I

3

I am able to walk alone but must use aids Iwalls. furniture. cane crutches. walker. or braces).

3

I can walk a few steps but usually use a wheelchair.

5

Studied

Meaning

Scale score

I ux I

but

7

IO

a wheelchair and cannot walk. have the ability to transfer.

h

I use a wheelchair cannot transfer.

7

I must be in bed all or most of the time.

exclusively.

and

29

9

I

4

The entire list of medical services received correlated with mobility level; that is. the more disabled (less mobile) the subject, the more likely he or she was to have used a particular service. Concerning the subjects’ opinions of medical services needed. generally a smaller percent felt they needed a service than had received it; this probably indicated medical needs were fairly well met. Of the perceived future medical needs, only physical therapy, bladder management, and special equipment were correlated with current mobility level. Many subjects indicated that they both had received and continued to need physical therapy. The perceived need for occupational therapy was age negative and duration negative tie, greatest in younger patients with shorter duration disease and correlated with the need for vocational services). There was no explanation of this service in the questionnaire and its nature may have been confused with job training. Use of most community services, with the exception of therapeutic recreation, was also significantly correlated with mobility levels (table 4). In contrast to the need for most of the medical services. subjects’ perceptions of need for all community services was correlated significantly with mobility level. In general, the number of respondents indicating a need for Table 3: Medical and Medically Related Rehabilitation Services Received and Needed % Receiving % Needing Service

service

Hospitalization Physical therapy Cane/crutches WheelchaIr Bladder management Braces Special equipment Occupational therapy Surgery Speech therapy

5 1”’ 5()“1.”

I 37’“J

45”’ 4()“l.d 24rnJ.”

Id I5 29” 5

, @n.d 15’” 14”’

, l’“.d ‘$111

service

I I ‘n ,4rn.dn

2 6

m-positively correlated with mobility level: d-positively correlated with disease duratlon; an-negatlveiy correlated with age; dn-negariveiy correlated with disease duration; a-positively correlated with age.

Arch Phys Med Rehabil Vol67,

Match

1986

Table 4: Community Service Visiting nurse Transportation Attendant care Homemaker service Home adaptation Therapeutic recreation

Services Received and Needed % Receiving service

% Needing service

I 5m.d I2rn.d

IO” Iom @?l,‘“’ 4

m-positively correlated with moblhty level; d-positively disease duration; sf--related to being female: sm--related

I 3”’ 22”’ 13” ,8”‘.”

15”’ 19”’ correlated with to being male.

community services was greater than the number receiving them. There were two areas of sex difference in this category. The need for homemaker services was greater for females. and the use of home adaptation was greater for males. In contrast to both medical and community services. the use of and the need for counseling services was not correlated with mobility level (table 5). Use and need of counseling services were related to younger age groups and recency of the MS diagnosis. The need for sexual counseling in this MS population was expressed predominantly by males. Twenty-five percent of the study sample were employed. Eighteen percent worked fulltime and an additional 7% parttime. The use of and need for vocational services was not directly correlated with disability level, although the need for vocational services showed significantly increased distribution toward mobility groups 2 and 4 (tables 2 and 6). Mobility level 2 was characterized by the presence of fatigue, and mobility level 4 was defined by wheelchair use. The negative correlation of the need for vocational services with disease duration and age indicated that the need for these services was primarily among the younger and more recently diagnosed subjects. When unemployed subjects were asked if they wanted to work at a paying job (assuming disabilities could be minimized), affirmative answers were correlated with being younger and having MS of shorter duration but not with mobility level. MS subjects who were employed were usually the ones who were able to continue in their pre-MS jobs. Very few had been reemployed at other jobs.

DlSCUSSlON With a single exception, the disease-related characteristics in this survey population are similar to those reported by others.‘.1,5,‘~.‘5.‘7,‘8 The exception is the symptom of fatigue. which we have reported in greater detail previously.’ We believe that the fatigue of MS is unique and can represent a significant cause of disability in MS patients. We believe that our sample encompassed the range of age, disability, and disease duration characteristic of the wider MS population. Corn-pared to studies which only evaluated hospitalized MS patients or patients treated in MS clinics, this sample is probably more representative of the total MS population. Our sample may. however. be underrepresented in terms of recently diagnosed cases of MS and those MS individuals most severely disabled. Although our sample is probably representative of the total MS population in terms of disease-related measures, there may be significant differences in measures not related to MS between those who chose to participate in this study and those were contacted and chose not to participate. These differences

PATIENT PERSPECTIVES IN MULTIPLE SCLEROSIS, Kraft Table 5: Psychologic

and Social

Services

Received

and

might be related to education. income level. and need for and WC of rehabilitation services. The principal findings of this study are that the use of and need for medical and community support services is primarily ,t function of the M!i individual’s level of disability, while the nerd for psychologic and vocational services is related to youth and the recencq of MS diagnosis. Since MS is a progressive disease, increaxinp disability levels are also correlated uith longer disease duration. Personal and t.umily counseling and vocational services are concern4 of‘ MS individuals earlv in the course of their disease (tahleh 5 and 6~ ,hJc)tall indiijiduals with MS will become disabled to the same degree. but all need to confront the possibility that they may become severely disabled. This suggests that rehabilitation in MS he organized. not incorporating physical disability as pritnary criteria, but on the basis of need of MS individuals to adjust periodically to a progressively disabling &ease. f’sychologic and vocational counseling soon after MS diagnosis takes advantage of patient motivation and has the potential to orient those with MS to a process of learning and ad.justment as a meanf of coping with this progressively disabling disease. The approach of learning and adjusting to MS has been xhown not onI>, to lead to a more positive self-concept but also to produce lasting t’unctional improvement. Brooks and Matson“ found that those individuals with MS who had learned to integrate the changes produced by the disease into their lifestyle had more positive self-concepts. Functional perfortnance of MS patients c\as Improved when intensive. multidisciplinary rehabilitation uas provided.’ The change in performance was due largely to motor and cognitive learning in the areas of selfcare. mobility and balance. homemaking. and other real life activltics. In all casts ;mprovement was maintained on followup more than ;I year later. again suggesting that the change WI\ due to learnin:! and not to changes in under1yin.g pathol‘I$!‘, Medical treatments knoun to be effective were used by the MS population studied (table 3). Physical therapy, mobilit? aid\. and bfadtlt.r management were the areas of greatest perTable 6: Vocational __-Service _______

__.

Services Received and Needed

__. % Receiving

f+” J.“’

\:o~atllml c~wl\ctlrl~ \‘ocatl~mdtralnln~ Exiucat~~~nsl ii>\t\ l’ocrttional placrnwt~t --

1.8,’

.--.___

I

service

5%Needing service

, ().l”_l,l’ dn , , ,lll,a,*Llll ,“‘N

I,)‘“’,,I’ dll

crived

need. indicating patients’ understanding of what could help them most. The fact that more individuals with MS were in need of bladder management than hacl received this treatment might reveal the difficulty of receivtng satisfactory bladder care outside of MS clinical centers or other large medical centers. Another study has determined that nearly half of ;I population of MS individuals saw their doctors less frequent11 than once a year.6 In follow-up interview\ with some of the individuals in the present study. many individuals reported an estrangement from the medical establishment soon after they received the diagnosis of MS. This often made it less likely that individuals would becotne invol\,ec in comprehensive rehabilitation strategies. and in some casr.5) made it more likely that they would fall prey to unproven medical treatments. Ix Just as spinal cord injury patients entet the bystem of care through a medical emergency room the Individual with MS could enter a systetn of care through the diagnostic visit. Ideally the diagnostic visit should introduc,r the MS patient to a system of rehabilitation services. I ’ ~.~nfi~ttunately. some local xystems may be less than ideal in term:. of their comprehen\iveness or even unacceptable to the diagnostic physician in terms of his:her evaluation of the patient’< best Interests. Our stud) has shown thal earlv in tiw courke of MS the motivation is often present for MS indi\%luals to become involved in rehabilitation if titnely refcn-.:lls are tllade and appropriate services are available. Even though medical needs in general ;ippeated well met, there are two characteristics of’ the disease which must be considered in designing an optimal rehablhtation program. First, ambulation is made more difficult by tlqe c,ombination of weakness. spasticity. and ataxia. Second, the t’uture course is uncertain, although some prognosttc guidelines are available, ” and the patient must be rehabilitated t’or ;i level of disability greater than the current observed level, “I(jverrehabi1itatior-1” will preserve function in the presence ot progression of disability. ADDRESS REPRINT George H. Kraft. MD

REQl’ESTS

Drparttnrnt of Rehabilitation Ilnrverait)- (,f Wachington SLwtk. bV.1 ox IV

TO:

Medicme,

K.I 40

References

Alexander L: Nen concept of crltlcal \tzpa III UXJIWot chronic dehilitatin@ neurologic disease in cvaluatlorl of therapeutic response: longitudinal study of multiple scfcrohth b! quantrtarive evaluation of neurologic involvement and tli:&ility Arch Neural Psychiatry 66:X-27 I. I95 1 Baucr HJ. Fimhaber W. Winhler U: F’rogno\tlc cr;tcrla in multiple sclcroG\. Ann NY Acad SCI 122:%-55 I. 1965 Bennett L. Hamilton R. Neutcl Cl. Pearson KK‘. T
168

PATIENT PERSPECTIVES IN MULTIPLE SCLEROSIS, Kraft

JS. Scheinberg L, Catalan0 M. Polkow L. Mantcgazza PM. Feigcnson WD. LaRocca NC: Cost-effectiveness oi multiple sclerosis rehabilitation: model. Neurology 31: I3 l&1321, IV81 8 Franhcl DL, Kraft GH, Freal J. Rondinelli RD. Cardenas DD: Multiple sclerosis: disability assessment by mobility scale. Arch Phys Med Rehabil 64505, IV83 9. Freal JE. Kraft GH. Coryell JK: Symptomatic fatigue in multiple sclerosis. Arch Phys Med Rehabil 65:135-l%. 10x3 IO. Johnson GS. Johnson RH: Social-services support for multiple sclerosis patients in west of Scotland. Lancet 1:3l-34. 1977 II. Kraft GH. Freal JE: Disability ratings in development of prognostic indicators. Acta Neurol Stand 64[Suppl 871:X0-Xl, I981 12. Kraft GH. Freal J. Coryell J, Hannan C. Chitnis N: Multiple sclerosis: early prognostic guidelines. Arch Phys Med Rehabil 6254-58. 1981 13. Kurtzke JF. Beebe GW. Nagler B. Kurland LT. Auth TL: Studies on natural history of multiple sclerosis. 8: early prognostic features of later course of illness. J Chronic Dis 30:819-X30, 1977 13. LaRocca H. Scheinberg L. Stater R. with Giesser B, Smith C. Trangott V. Schapiro R, Paty D. Franklin G, Cobble N. Pctajan

7

Feigenson

IS.

16.

17.

IX.

19. 20.

J. Kraft G. Frankcl D. Catanzaro M, Poser C. Tourtellotte W. Bannhefner R: Field testing of a minimal record of disability in multiple sclerosis: The United States and Canada. Acta Ncurol Stand Suppl 101:13-&-13X, 1984 Lcibowitz U, Halpem L, Alter M: Clinical studies of multiple xlerosis in Israel: I. clinical analysis based on country-wide survey. Arch Ncurol 10:502-51’. 1965 Nie NH. Hull CH. Jenkins JG. Steinbrenncr K. Bent DH: Statistical Package for Social Sciences. Ed 3,. New York. McGmwHill, 1975 Panelius M: Stud& on cpidemiological. clinical and etiological aspects of multiple sclerosis. Acta Neural Stand 45[Suppl39]: l8,. I969 Poser S, Wikstriim J, Bauer HJ: Clinical data and identification of special forms of multiple sclerosis in 1271 cases studied with standardized documentation system. J Neurol Sci 40: 159-168. 1979 Slater RJ: Model of care: matching human services to patients’ needs. Neurology 30(7. pt 2):39%43. 1980 Slater RJ: What about new treatments’? I~I Schcinbcrg LC ted): Multiple Sclerosis: A Guide for Patients and Their Families. New York. Raven Prc\s, 1983

BOOK REVIEWS

PROCEEDING OF THE WORKSHOP ON DISABLED AND SPORTS edited by Jrtrr~ H Hoehrrigs rrmf Hum Vorsmdd.Softcover.166 page\. 14 Dutch guilders only - checks payable to and published by Workshop Nederlanda Invaliden Spurtbond. Nederlandae Middenstandsbank, Amerafon. The Netherland This book ~~vcs I detailed account ot se&>n\ which comprised the Workshop on Disabled and Spw\ held in The Ncthrrlandb in 1983 Inter-eating and comprehcn\lve reports of variuu\ wwtjns Include research finding In exrrcw physiology of athletes. a comparison of exercise physiology it athletes both %,irh and ~~ithou! locomot~)r disahlhtitts. how rxcrcibe affects the electrucardlogram\ of kg ;Imputces. and how cardiac load ih aftected by prothetic tmining. Alw tcatured wc clawfication systems for distbled athletes and problem\ encuuntered in cl;i\\ification. Rescurch data prcwntod during thih uorkshop wb\tantiatca the fact that muscle fiber composition varies in indivtduals and the pcrccntage of slw.twtch wrsub ta\t-tultch fibers determines the suitabdtty of a particular person for long-term sctivitlcs. The researcher emphasize>. however. that trainmg can enhance perf~~rmance in area!, of physiological aptitude ah well we imprwc changes of achievement in areas where basic endowment is deficient. Thuh. linowledge of muscle fiber make-up can benefit rehabihtatwn personnel and physical educatmn teacher5 m dctermming the pattern of training must beneficial for instruction of athlete> with and without disabilltw The cffcct of dlaabllity on physical capacity. efficlcncy and cluasruom attentmn, and the effect of physical training on these factora i\ discussed and will mtrlgue phywal education teachers as well ;~s medical protewonals. The chapters on cardiac problema of elderly amputees and the effect of prosthetic training on electrl,c:ardl~)Llrln~~ has implicatiuna for both cardiologist> and wthopedic \urgeonz The talc of hporta m the rehabilitation of the kabled and contained effort, tuward the formulation of a fair clasGfication system tur handicapped participant\ in \pona competittons v.ill be of intcreht to thew mvolved in sport\ mcdtwtc. The rewarch results documented m thih ho& are baiuablc enttugh to mtn. m~kc tran4atwn error.\ in grsnmsr and spelling which wcur in certain XX!ionb of the booh. It I\ 9 timely investment for rehabilitation apeci&t\ and physlc;ll education washers lntcrc\trd in the relationship of aports rind the handicapped. (&r~ir .Sw (‘lilr. MN\

Arch Phys Med Rehabil Vol67.

March 1966

THE ELITE ATHLETE by Nanc,~ k’ Blrrt.,. PhL). 7‘hwn~1.\ 7‘. GusIII’~~. PhU. crud B. Zk~s. ML). Hardcover. Price $35.011 Xi pages. SP Medical and Scientific Books. 175-10 Wexford Terrace, Jamaica. NY 11431. Thia book may be useful to someone who I!, involved In sports medicine. Moat of the chapters are written by members of the US Olympic Committee and the publication ia an outgrowth of the Elite Athlete Tract uf the 1983 Lactoase Health and Sports Science Sympusmm. The I7 chapters are divided into five parts. The Eir\t dlacu>heh the adnunistwtivc ~ssueb regarding suppurt of medical cart. training programb. educ~ition and reararch. Description> of the biomechamcal akprcrs of improving ;ithletic performance arc included in the second part P.\ychoiogicnl skpects of athletic performance are included in the third wctmn. The fourth part dircusbeh exercise phy\wlogy. which may bc of mterc\t to phy\iatriats and phywal therapists. Finally. the last section contalw nutritlonnl ahpccts. ClearI) $~Iittcn. it would be easy to understand for those without 2 good background in sports medicine. tChun,q-Zer-rl Hqq. MO)

EXERCISE IN PREGNANCY by KIJI~/ rlrrul wrc/ Kohrrr .4 M’kwll. Hardcwcr. Price $36.50. 241 page\. Williams and Will&b. PO Box 969. WaverI) Press Lane. Easton. MD 21601. Thla book presenta an excellent cullcctwn uf authora outlining the physiology that pertams to pregnancy and rxcrcibe. The chsptcrb range from exercise phyawlogy to maternal and fetal change\. The nutritunal need\ of the physlcally active pregnant woman are reviewed along with the hormonul and pulmonary response\. and abnormal states. Contributing author\ halve pteacntcd the topics in a well-rounded manner. With references irt the end of each chapter. thl\ hook I\ ;I gwd rrtcrmce wurce fkr the bak physiokqy and effects ot an ctercisc program