The services and social needs of people with multiple sclerosis in New South Wales, Australia.

Introduction

Multiple sclerosis (MS) is a chronic disease of the nervous system which, in general, affects young and middle-aged adults. Damage to the myelin sheaths surrounding nerves in the brain and spinal cord affects the function of the nerves involved. The progression of the disease is characterized by recurrent relapses and remissions. McDonald (1992) described common clinical symptoms as unsteady gait and shaky movements of the limbs, rapid involuntary eye movements, bladder and bowel disturbance, cognitive changes and spastic weakness. Other symptoms include fatigue, heat intolerance and pain. The cause of the nerve damage is not known. McDonald (1992) states the most favored proposition as to the cause of the disease is that a

"genetically susceptible individual develops an autoimmune process in response to an environmental trigger, such as a virus".

Treatment of MS includes the use of immunosuppressive and anti-inflammatory drugs, special diets, vitamin and mineral therapies, hyperbaric oxygen and the removal of dental amalgam. Management of symptoms of the disease can take the form of air conditioning in cars and homes for heat intolerance; pain management drugs; stretching and weight bearing activities, splinting and relaxation therapy, medication, peripheral nerve blocks and biofeedback for spasticity; medication for bladder dysfunction; diet and fluid intake control for bowel dysfunction; weighted limb bands and aids to daily living for tremor. Other general physical supportive measures can include walking aids, wheelchairs and adaptive equipment to allow independence. Emotional supportive measures include counseling for financial, employment and psychological issues.

The difficulty in providing an accurate diagnosis of MS in some cases and the lagtime for clinical onset of the disease are factors which affect the accuracy of incidence and prevalence estimates of MS are discussed by Sadovnick and Ebers (1993). Sadovnick and Ebers(1993) summarize MS prevalence rates into "high", "medium" and "low" risk groups. The groups are defined as:

'Rates from 30 per 100,000 characterize "high risk" areas such as northern Europe, northern United States, Canada, southern Australia and New Zealand. "Medium risk" regions (prevalence between 5 and 25 per 100,000) population may include southern Europe, southern United States and northern Australia. "low risk" areas (prevalence less than 5 per 100,000 population) include Asia and perhaps parts of South America'.

Both Sadovnick and Ebers (1993) and Wynn, Rodriguez, O'Fallon and Kurland (1989) report on increases in prevalence rates when a geographic region's rate is assessed again at a later data. Wynn et al. (1989) acknowledge that increases in prevalence may relate to increased survival of MS patients, changes in population age composition, migration and miscellaneous effects of restudy but also stress that an increase in incidence should also be considered. The prevalence of MS in the Australasian major population regions is as, at times, high as much of North America and Europe. Prevalence has been measured as high as 69 per 100,000 (Compston, 1990) in the south of New Zealand and 76 per 100,000 (Compston, 1990) in Tasmania. There have been studies which addressed the epidemiology of the disease in the Australasian region including one examining the determinants of MS (Miller, Hammond, McLeod, Purdie, and Skegg, 1990) and another specifically looking at the epidemiology of the disease in 3 cities (Hammond, McLeod, Milligen, Stewart-Wynne and McCall, 1988). However, these studies did not assess need or service requirements for people with MS. Comprehensive studies of needs of people with MS have been conducted in both North America (Kraft, Freal and Coryell, 1986) and the United Kingdom (Elian and Dean, 1983) but not in the Australasian region.

Providing rehabilitation for a chronic and progressive disease which, in its early stages, shows few physical signs of disability has proven a difficult task for support organizations in Australia and is made more difficult because of the lack of published studies which identified the needs of people with MS in the community.

This study was commissioned by the MS Society of New South Wales (NSW). NSW is an Australian state with around 35% of the total population of Australia. This study provides a detailed demographic profile of people with MS in NSW which in some cases confirmed the findings of overseas studies. The aim was to obtain demographic and socioeconomic information about people with MS including employment history and education. Respondents were asked to assess their relative needs and whether those needs were being met. The survey provided a comparison of importance of health professionals and a measure of disease duration and level of disability. Levels of use and support provided by government and non-government agencies in the management of their disease were assessed by the respondents. Demand for services was examined in relationship to a number of demographic variables and the severity and duration of disease.

Methods

A cross-sectional study was conducted using a mailing list from the MS Society of New South Wales. All persons registered with the MS Society of NSW were surveyed, and others with MS were encouraged to participate using advertisements in local media and further informal publicity to encourage all additional people with MS in the community to participate. The survey instrument was mailed to 1,604- people, which represents around half of the estimated population in NSW with MS (based on a crude prevalence rate of 38 per 100,000 (Compston, 1990)). One thousand one hundred and forty five completed questionnaires were returned providing a 70% response rate. (This was a very good response rate for a mail-out survey.) A toll-free telephone number was provided for potential respondents who needed information about the purpose of the survey.

The survey instrument was pre-tested and refined following suggestions from a pilot group. The pilot group consisted of sixteen people registered with the MS Society of NSW who provided information on the clarity of questions on the draft questionnaire and how long the survey took to complete. The questionnaire was self-administered unless the respondents were unable to write because of the severity of their disability. In those cases, it was emphasized that the opinions sought were those of the respondent not of the writer. The authors were particularly aware of the need to design an instrument to suit a population which might have severe physical disabilities; hence the majority of the questions were closed-ended with six open-ended questions used to clarify previous responses. Respondents were encouraged to make general comments at the end of the questionnaire. Likert scales were used to assess levels of need and satisfaction with services.

Data were coded and checked for validity. The data were then computer analyzed using SPSSX software.

Results

In this study 27% of the respondents were male, 73% female. This representation is similar to the results of the study by Kraft (Kraft et al., 1986) where 71% were female. The mean age of respondents was 48.9 years (s.d. = 12.4-) which can be compared to the result of the Williams' paper (Williams, Jones and McKeran, 1991) where the mean age of the respondents was 50 years (s.d. = 14.3).

Figure 1 presents the age distribution by gender. This illustration is a reminder that the great majority of people with MS are members of the working age population who would be expected to be members of the workforce.

Almost half (4-6%) of the respondents stated that they believed their continued employment was threatened by having MS. The distribution of respondents with employment threatened by the disease varied across occupations. The proportion of respondents with their employment threatened by MS in each occupation category is given in Figure 2. The graph demonstrates that the disease poses a greater threat to process workers and tradespersons. These two occupations require a greater level of manual labour than the other occupations given in the graph.

The association between occupation and threat to employment was significant using the chi square statistic [[X.sup.2](df=8)=31.7, p.01]. Fatigue was the most often reported reason for job loss. Other symptoms of MS negatively affecting employment included vision, balance, memory, concentration, fine and gross motor skills, bowel control, tremor and pain.

With respect to personal needs, respondents were asked to rate their needs and the extent to which they are currently being met. Personal needs were rated on a scale from 1 to 7 where 1 represented "no need at all" and 7 represented "great need".

Table 1 presents the proportion of respondents stating a need is not being met. The data indicate that there is not a great variation in the levels of need with all means between 2 and 4. The greatest need for assistance was with household tasks. However, tlere are clear differences in whether these needs are being met. The area where the need is not being met most frequently is support for family members. Other important areas of unmet need are long and short breaks from home and support from others with MS.

Forty percent of respondents were managing their personal needs themselves. Another 30% had their personal needs managed by their partner, around 20% of respondents had needs managed by other family and friends, and only 10% dependent on health professionals or organizations to manage their needs.

Proportion of Unmet Need of Persons MS by Category of Need

Health Professional                  Mean Rating
                                    of Importance

Family Physician                        5.38
Neurologist                             4.00
Physiotherapist                         3.40
Urologist                               3.03
Social Worker                           2.33
Occupational Therapist                  2.24
Community Nurse                         1.96
Psychologist/Neuropsychologist          1.66

Respondents were asked to rate the relative importance of health professionals in managing MS on a scale where 1 indicated "unimportant to me" and 7 indicated "very important to me." Table 2 presents the mean of the respondents' scores for each health professional.

The most important health professional in the continued management of MS as rated by the respondents was the family physician. Other important health professionals were neurologists, physiotherapists and urologists.

Table 2: Relative Importance of Health Professionals

Category of                        Proportion reporting
Personal Need                           Unmet Need

Support for family members                42.5%
Long-term breaks from home                31.4%
Support from others with MS               28.9%
Short-term breaks from home               28.7%
Access to recreation & leisure            22.4%
Access to transport                       15.6%
Household tasks                           10.3%
Physical access to home                   10.2%
Access to health services                  9.2%
Personal care                              4.3%
Table 3: Relationship between Level of Disability and Duration of Disease

Disability                 Association of
                           Severity of Disability
                           with years since MS
                           diagnosed (X2 with 3df)

Vision                     N.S.
Speech                     p [is less than] 0.01
Swallowing                 p [is less than] 0.01
Arms and/or Legs           p [is less than] 0.01
Balance                    p [is less than] 0.01
Tremor                     p = 0.028
Bladder                    p [is less than] 0.01
Bowel                      p [is less than] 0.01
Sexual function            p [is less than] 0.01
Memory/thinking            p = 0.014
Fatigue                    p [is less than] 0.01
Heat Intolerance           p [is less than] 0.01
Pain                       p [is less than] 0.01

Respondents were asked to rate their level of disability due to MS on a number of factors. The scale began with 1 defined as "no disability" to 7 defined as "severe disability." Figure 3 presents the proportion of respondents citing having at the least some disability for each of the impairments associated with MS.

The main disabilities mentioned were fatigue and heat intolerance. These were followed in severity to a lesser extent by disabilities associated with limbs and balance. Bladder disabilities was the mentioned next by over 40% of respondents. Around 30% cited pain, sexual function, memory, bowel, vision and tremor as disabilities. Speech and swallowing were the least cited disabilities.

The effect of the progression of the disease on their abilities was measured using a chi square test of significance. A measure of the association of the disease duration (in years since diagnosis was confirmed) with the current level of disability is given in Table 3.

Vision was the only disability which had no significant association with the progression of MS. Although this is a surprising result, any deterioration of vision by the respondents may have been associated with aging rather than progression of the disease.

In order to identify service and information gaps at the time of diagnosis of the disease, respondents were asked about help they would have liked to have had when the disease was confirmed. Over half identified "better information about MS" while "more informed medical treatment" was recognized by 48%. Professional counseling for both the respondent and for their families was the next most frequently identified service need. Support from others with MS and employment advice was less frequently mentioned. Figure 4 shows the relative levels of assistance required on diagnosis.

Respondents were asked to note the age of first symptoms and the age diagnosis was confirmed. It is appreciated that while there are obvious problems of recall for specifying the time of first symptoms, nevertheless there are some interesting results based on the respondents' perceptions of first symptoms. Figure 5 illustrates the differences in distribution of first symptoms and diagnosis being confirmed.

The mean age of diagnosis was 38 years (s.d. = 10.9) with a mean age of first symptoms of 30.3 years (s.d. = 1 1.I). In the study reported by Elian and Dean (Elian and Dean, 1983), the average age of onset of the disease was 32.7 years. Another study in Olmstead County in the United States by Wynn et al (1989) had a median age of onset for females of 32.4 years and for males a median age of 34-3 years. An interesting result obtained by disaggregating both age of first symptoms and age of diagnosis by gender is that there is no significant association between gender and age of diagnosis but there is a significant association [% (df = 5) = 18.0, p = 0.02] between gender and age of first symptoms. The data indicate that women notice symptoms earlier than men. Respondents were asked to note the age of first symptoms and the age diagnosis was confirmed. It is appreciated that while there are obvious problems of recall for specifying the time of first symptoms, nevertheless there are some interesting results based on the respondents' perceptions of first symptoms. Figure 5 illustrates the differences in distribution of first symptoms and diagnosis being confirmed.

The mean age of diagnosis was 38 years (s.d. = 10.9) with a mean age of first symptoms of 30.3 years (s.d. = 1 1.1). In the study reported by Elian and Dean (Elian and Dean, 1983), the average age of onset of the disease was 32.7 years. Another study in Olmstead County in the United States by Wynn et al. (1989) had a median age of onset for females of 32.4 years and for males a median age of 34-3 years. An interesting result obtained by disaggregating both age of first symptoms and age of diagnosis by gender is that there is no significant association between gender and age of diagnosis but there is a significant association [% (df = 5) = 18.0, p = 0.02] between gender and age of first symptoms. The data indicate that women notice symptoms earlier than men.

Discussion

These results conform the disease-related findings reported in other surveys (Kraft et al. 1986; Elian et al.; Williams et al., 1991). The recognition of fatigue as a major cause of disability resulting from MS corroborates Kraft et al. (1986). Given the comparability of this survey's findings to other international studies, the sample size of 1,143 and the high response rate, we believe the survey results are representative of the needs of people with MS living in the community.

This study confirms the findings (Kraft et al., 1986) that almost all physical disabilities due to MS increase in severity with the progression of the disease. However, an important finding from this survey was that the needs associated with physical disabilities are more often met than the emotional needs of people with MS. Around 30% of respondents stated their needs were not being met in the areas of long and short-term breaks from home and in receiving support from other people with MS. An additional 40% stated that needs were not being met in terms of support from their family members. These unmet needs reflect the emotional strain of the disease on home life and the need for support for not only people with MS but also their families. Respondents were invited to comment on the way that MS had affected family and other relationships. A recurring theme in the comments was the inability of both family and friends to be sympathetic to someone with a disease during its initial stages when it manifests itself as overwhelming fatigue but shows few external signs of physical disability. Although it was not a specific question in the survey instrument, comments from respondents suggested lack of recognition of the earlier effects of MS had led to a breakdown in relationships for many respondents.

Another salient finding was the identification of the respondent's family physician as the most important health professional in the management of MS. Of less importance, but still significant, was the importance of neurologists to people with MS. However, when asked about help which they would have liked after diagnosis, but which was not then available, respondents identified "better information about MS" and "more informed medical treatment" as major areas where help was lacking. A study by Black, Grant, Lapsley and Rawson (1992) of the attitudes of family physicians to MS patients showed that many physicians did not have knowledge of the role of private, public and voluntary non-government organizations in the provision of health care services for People with MS. The study also showed that physicians wished to distance themselves from the services provided by support organizations and that the nexus, if any, was between the support group and the patient. This might explain the respondents' perception that the family physician is not as well informed about the disease and the services available to manage MS as may have been wished by the patient.

Recommendations

Erickson, Lie and Wineinger (1989) state that

'the goal of rehabilitation in multiple sclerosis is to maximize the patient's physical, emotional, social and vocational independence'.

This study of the service and social needs of people with MS underlined the importance of the social and emotional needs of the respondents. Thus there are number of recommendations relating to these needs. Support organizations for people with MS should seek to review and strengthen services for persons newly diagnosed. Ways in which this can be achieved include:-

* The identification of information, education and peer support by neurologists and family physicians about MS and its short-term and long-term management;

* The identification of information, counseling, assessment and therapy needed by patients, their families and friends;

* Produce a video for loan or purchase which demonstrates, visually, the appropriate information requirements for people with MS;

* Appropriate media coverage to convey the necessary messages about available services in the most effective way, to urban and rural sites; and

* Expansion of services for people with MS to include the services of specifically trained rehabilitation counselors.

References

Black D.,Grant, C., Lapsley, H. and Rawson G. (1992) A profile of multiple sclerosis in NSW-knowledge, needs and prevalence Report for the NSW Multiple Sclerosis Society (unpublished).

Compston, D.A.S. (1990) The dissemination of multiple sclerosis. Journal of the Royal College of Physicians of London Vol. 24, pp 207-218.

Elian, M. and Dean, G. (1983) Need for and use of social and health services by multiple sclerosis patients living at home in England. The Lancet Vol. 2, pp. 1091-1093.

Erickson R.P., Lie M.R. and Wineinger M.A. (1989) Rehabilitation in Multiple Sclerosis. Mayo Clinic Proceedings, Vol. 64, pp 818-828.

Hammond, S.R., McLeod, J.G., Milligen, K.S., Stewart-Wynne, E.G. and McCall, M.G. (1988) The epidemiology of multiple sclerosis in three Australian cities: Perth, Newcastle and Hobart. Brain Vol. III, pp 1-25.

Kraft G.H., Freal, M.S. and Coryell, J.K. (1986) Disability, disease duration and rehabilitation service needs in multiple sclerosis: patient perspectives. Archives of Physical Medicine and Rehabilitation Vol. 67, pp 164-168.

McDonald E. (1992) Multiple sclerosis: common management issues. Australian Family Physician Vol. 21, No. 10, pp 1421-1424. Miller, D.H., Hammond, S.R., McLeod, J.G., Purdie, G. and Skegg D.C. (1990) Multiple sclerosis in Australia and New Zealand: are the determinants genetic or environmental? Journal of Neurology, Neurosurgery and Psychiatry Vol. 53, pp. 903-905.

Sadovnick A.D. and Ebers G.C. (1993) Epidemiology of multiple sclerosis: a critical overview Canadian Journal of Neurological Science Vol. 20, pp 17-29.

Williams, E.S., Jones, D.R. and McKeran, R.O. (1991) Mortality rates for multiple sclerosis:geographical and temporal variations revisited. Journal of Neurology Vol. 54, pp 104-109.

Wynn D.R., Rodriguez M., O'Fallon W.M., and Kurland L.T. (1989) Update on epidemiology of multiple sclerosis. Mayo Clinic Proceedings Vol 64, pp 808-817.