Disabil Rehabil 2001 Aug 15;23(12):516-21
Ford HL, Gerry E, Johnson MH, Tennant
A.
Department of Neurology, St James's University Hospital Trust, Leeds, UK. Helen.ford@gw.sjsuh.northy.nhs.uk
PURPOSE:
The aim of this study was to ascertain
the health status and quality of life of a community based cohort of people
with multiple sclerosis.
METHOD:
A postal questionnaire with self-completed
measures of impairment, disability, physical dependency and quality of
life was sent to a random sample of 203 people with multiple sclerosis
from a population register. The sample was stratified according to five
disease courses. The population register is of the prevalent population
of 760 people with multiple sclerosis resident in the Leeds Health Authority.
The register used multiple sources of ascertainment and is prospectively
maintained with new incident cases.
RESULTS:
The estimated mean age of people
with multiple sclerosis is 46 years (SE: 0.85), and mean duration of disease
is 14.4 years (SE: 0.69). Almost four in five (78 %) are female, and one
in six (17%) live alone. Impairments of balance, vision and memory are
common and in all cases there is little difference in the frequency between
disease course groups. In contrast, impairments of bladder and bowel are
more common in those with a progressive disease course. Disability is more
common in those with a progressive disease course but all scores on the
SF36 Physical Function scale are low and demonstrate the disabling consequences
of the disease, irrespective of disease course. These consequences must
contribute to the fact that over two-thirds (68 %) were not employed at
the time of the survey. Quality of life does not differ across disease
course groups, but rather varies by age and duration.
CONCLUSIONS:
People with multiple sclerosis experience
a range of impairments and disabilities. Those with progressive disease
courses experience greater levels of impairment and disability than other
groups. There is not a straightforward exchange between health status and
quality of life. A measure of subjective quality of life may reflect adjustment
to disease, such that, for example, the longer the duration, the older
the individual, the more likely the person will report a relatively good
quality of life.
PMID: 11432648 [PubMed - in process]