Epidemiology and needs assessment of multiple sclerosis in Glasgow

The aims of the study were

• To identify all people with multiple sclerosis within 3 LHCCs (169,000) in Glasgow
• To assess the level of unmet need and so
• To produce some evidence on which to base decisions about the future development of services for people with MS.

Methods

We used 5 sources of information to identify as many people with MS as possible. These were primary care, secondary care, neurologists, the MS Therapy Centre and the Community Physical Disability Teams.

We searched general practitioner casenotes for information about presentation, diagnosis and duration of illness.

We sent a questionnaire to people with MS who had been identified. We asked about level of disability and quality of life. The questionnaire included questions aimed at identifying areas of unmet need.

Results

1. Epidemiology

Estimates of incidence and prevalence of multiple sclerosis in the population were similar to those found in previous studies. However, both incidence and prevalence were higher in areas of material affluence. Why this should be the case is not known.

Assuming the prevalence found in this study of 14.5 cases per 10,000, we would expect 1321 people with MS in the GGHB area.

Assuming the pattern of incidence found in the study, we would expect approximately 52 new cases of MS to be diagnosed in GGHB area each year although five times that number will have been referred for investigation.

Using mortality data and population projections, the number of people with MS in Glasgow is expected to increase by around 22% to around 1600 by the year 2008.

2. Survey

We identified 245 people with multiple sclerosis in the 3 LHCCs and with the GP’s permission, we sent questionnaires to 195 of them. The response rate was 76% after 2 mailings.

A number of areas of unmet need were identified by the survey. These include treatments, services and support delivered by the health service and social services.

Family and friends were the most important source of help and support for people with MS.

Physiotherapy, home support and need for information were the most important specific needs that emerged as priorities.

The more general needs that were identified included better integration of services and communication, and more knowledgeable and supportive staff. These general needs are also applicable to other chronic conditions.

Although it has had a large amount of publicity, beta-interferon was mentioned by a very small number of people - 7 out of 195.

Conclusions

The needs identified in the survey were many and varied and reflect the range of disability. The results show that commissioning of services should focus on expanding and improving existing services e.g. physiotherapy, and so benefit a large number of people, rather than focusing solely on new treatments and services, e.g. beta-interferon, when a large number of other needs are not being met.

When one considers beta-interferon, less than 20% of people with MS are eligible for treatment, one third of those offered treatment decline it, a further 10% withdraw during treatment and unfortunately, not everyone who is treated with the drug derives benefit.

The importance of services and support provided by social services in meeting the needs of people with multiple sclerosis cannot be underestimated.

As family and friends are the most important source of help and support for people with MS, their needs cannot be ignored.

Gillian Penrice, 10th January 2001