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Multiple sclerosis and healthcare services

 

Bottom line

People with MS have a wide variation in their need for services, and unmet needs. Information is what they need most, about conventional and unconventional therapy, advice and access to appropriate professionals.


Reference

M Somerset et al. What do people with MS want and expect from health-care services? Health Expectations 2001 4: 29-37.

Study

A stratified sample of people with MS in Scotland and England were chosen to answer a postal questionnaire designed specifically to elicit information about them and their condition. It included SF-36 and Beck depression inventory. Stratification was geographic - Scotland, and Norther England, the Midlands, and Southern England, to take account of the known increased prevalence at higher latitudes. Randomly selected primary care practices were asked to participate, and then people with MS registered with those practices were asked to complete the questionnaire.

Results

One in three of the 200 practices approached agreed to participate. The total number of MS patients on the lists was 537, but 66 were regarded by their GP as too ill to receive a questionnaire, and 471 were sent. Of these 68% were returned. Most (83%) of the 265 participants were able to categorise their MS as benign (15%), relapsing/remitting (33%), relapsing/progressive (15%), or progressive (37%).

Responses for SF-36 showed, not surprisingly, higher scores (better indicating better health status) for less severe compared with more severe disease. MS patients of whatever disease severity had worse scores than from a national survey of a similar age range.

Depression occurred frequently, and increased with disease severity. The proportion with moderate or severe depression was over 60% in those with the most severe disease, compared with 15% in those with benign disease (Figure 1).

Figure 1: Moderate or severe depression in MS patients


Self-treatment

Use of self-treatment was common (Table 1) and differences in their use between men and women small except that more women used evening primrose oil. Evening primrose oil, multivitamins and diets were most commonly used.

Table 1: MS patients use of self-treatment

Home treatment

Percent

Evening primrose oil

47

Multivitamins

37

Diet

18

Cannabis

8

Hyperbaric oxygen

5

Counselling

5

Homeopathy

4

Spiritual healing

3

Sunflower seed emulsions

3

Advice required

Further advice was needed by MS patients on a wide range of topics, from exercise (41%) to finances (10%), and included information on conventional and alternative therapies (Table 2).

Table 2: Advice required by MS patients

Advice required

Percent

Exercise

41

Beta interferon

33

Urinary problems

32

Diet

32

Medication

27

Alternative medicine

27

Mobility

18

Housing

16

Finances

10

Health professionals

Where there was contact with health professionals, through GPs, consultants, nurses to aromatherapists, homeopathists and to disability coordinators, it was overwhelmingly though to be helpful. Unhelpful contacts were thought to be with consultants (21%), specialist MS nurses (20%) and GPs (13%), perhaps reflecting the difficult nature of the disorder and the lack of really effective interventions.

Comment

This will tell some people what they think they already know. But even for those familiar with MS and MS patients, there is something to be learned from this. The list of topics on which MS patients might commonly want advice demonstrates a need that can be met by preparation, to provide before the patient might even know they want that information.

What's missing is bite. For instance, the list of self-treatments includes many that are known not to work. Yet it is hard to be dogmatic in the face of an awful disease for which we have all too little to help.