MS Survey Highlights Need For Assessment Tool

Multiple Sclerosis Survey Highlights Need For Assessment Tool To
Identify Gaps In Provision

29 Mar 2007   

People with multiple sclerosis need much more practical help and better
care support, according to a study published in the latest Journal of
Advanced Nursing.

Researchers from King's College London explored the aspirations of 445
patients with different levels of multiple sclerosis (MS), who were
taking part in a wider study to evaluate MS specialist nurses.
They believe that their findings could form the basis for developing an
MS satisfaction tool, which could be used to assess quality of care in

The tool could also identify the gaps in provision that still exist
despite the MS guidelines issued by the National Institute for Health
and Clinical Excellence, which advises the UK Government on health

29 per cent of those who took part in the survey said that medical
treatment was their number one priority when it came to meeting their
current needs, but 19 per cent specified socio-economic support, with 67
per cent of those specifying household adaptations, better transport
provision and re-housing.

The need for help with financial and employment problems was also
A further 18 per cent pointed to the need for enhanced care provision,
including improvements in the availability, accessibility and continuity
of health and social care provision.

Respondents felt health care professionals needed greater knowledge
about MS and how to manage it and wanted better co-ordinated services
with one central point of contact. They also felt that specialist MS
nurses had an important role to play.

Nine per cent of respondents wanted more information about MS treatments
and services and some felt that families and society needed to improve
their understanding of MS and how it affects people.

Seven per cent wanted better access to rehabilitation therapies, notably
physiotherapy. Occupational therapy and rehabilitation therapies were
also mentioned.

Six per cent wanted non-professional care - including support with
personal, home and child care - and a further three per cent needed help
with psychological issues.

"The aim of the study was to identify what people with MS needed most
and to compare the responses between people with different levels of MS"
explains lead researcher Dr Angus Forbes.

"People with minimal levels of MS rated medical treatment as their
highest priority, followed by enhanced care, as did people with severe

"Patients with mild MS also rated medical care first, with
socio-environmental help and enhanced care in joint second place. But
people with moderate MS, rated medical care in second place behind
socio-environmental help."

The 714 people taking part in the wider MS study were recruited from
seven neurological centres across five English regions.

435 responded to the question "What one thing would be most helpful in
meeting your current needs" in the first questionnaire and 424 responded
to the question in the second survey a year later. 270 people answered
the question on both occasions.

The average age of the respondents was just over 48 and 69 per cent were
female. Average time since diagnosis was just over 11 years and 83 per
cent of respondents lived with others.
60 per cent had progressive MS, 29 per cent had relapse-remitting MS.
Other forms of MS accounted for 11 per cent of the sample.

More than one in three had moderate MS (35 per cent), followed by severe
(28 per cent), mild (20 per cent) and minimal (17 per cent).

"Since our research was carried out, the UK's National Institute for
Health and Clinical Excellence has produced MS care guidelines which
seem to echo the aspirations expressed by the MS patients who took part
in our study. But a 2006 study suggested that little had changed, with
few health authorities implementing the guidelines" says Dr Forbes.

"Such deficits are not confined to the UK and have been reported in
wider surveys across Europe."

"Our survey, which was funded by the MS Society for Great Britain, shows
very clearly that people's needs change as their MS develops.

"Developing a needs assessment tool specifically for MS would be an
important first step in ensuring that healthcare meets those individual
and changing needs, as it would show how well care is currently being
provided, identify gaps in provision and point to areas for future

What people with multiple sclerosis perceive to be important to meeting
their needs. Forbes et al. Journal of Advanced Nursing. 58.1, 11-22.

-- Journal of Advanced Nursing is read by experienced nurses, midwives,
health visitors and advanced nursing students in over 80 countries. It
informs, educates, explores, debates and challenges the foundations of
nursing health care knowledge and practice worldwide. Edited by
Professor Alison Tierney, it is published 24 times a year by Blackwell
Publishing Ltd, part of the international Blackwell Publishing group.

-- Blackwell Publishing is the world's leading society publisher,
partnering with 665 medical, academic, and professional societies.
Blackwell publishes over 800 journals and has over 6,000 books in print.
The company employs over 1,000 staff members in offices in the US, UK,
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merged with John Wiley & Sons, Inc's Scientific,
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-- King's College London is the fourth oldest university in England with
approximately 13,700 undergraduates and 5,600 graduate students in nine
schools across five London campuses. The College has had 24 of its
subject- areas awarded the highest HEFCE rating of 5* and 5 for research
quality and it is home to five Medical Research Council Centres. King's
has a particularly distinguished reputation in the humanities, law,
social sciences, natural sciences, biomedicine and nursing and has
played a major role in many of the advances that have shaped modern
life, such as the discovery of the structure of DNA.

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