A longitudinal survey of self-assessed health trends in a community cohort of people with multiple sclerosis and their significant others.
BACKGROUND
Studies assessing psychosocial consequences of multiple sclerosis (MS) in the community are scarce; it appears that there are no longitudinal surveys in this area.


OBJECTIVE
We prospectively assessed changes in self-perceived health status over 5 years in a community cohort of MS adults.


METHODS
The 251 people who participated in a 1999 postal survey were re-assessed in 2004, being sent the Multiple Sclerosis Quality-of-Life-54 (MSQOL-54), the Chicago Multiscale Depression Inventory (CMDI), and a demographic/clinical questionnaire. Health-related quality of life (Short Form-36) and CMDI were also assessed in participants' significant others.


RESULTS
A total of 205 people participated: 14 (5.6%) of the original cohort MS had died and 32 (13%) did not return the questionnaires. A significant other was available for 74% of responders. The proportion requiring constant bilateral walking assistance increased from 16% to 33%. The proportion using housing adaptations increased from 17% to 27%, and the use of daily home care increased from 19% to 28%. Impaired CMDI mood affected 27% of MS and 19% of significant others. Changes in MSQOL-54 were not unidirectional: the domains change in health, physical function, and general health worsened; while social function, mental health, and health distress improved significantly.


CONCLUSIONS
MS has a pervasive but inhomogeneous impact on the lives of MS sufferers: the proportion of those severely impaired doubled over the study period; nevertheless in 23% of participants the disease remained mild over a median duration of 11 years. The psychological burden affects not only people with MS but also their significant others.
Solari
Alessandra
A
Laboratory of Epidemiology, Istituto Nazionale Neurologico Carlo Besta, Via Celoria 11, 20133 Milan, Italy. solari@istituto-besta.it
Ferrari
Giusi
G
Radice
Davide
D
D000203:Activities of Daily Living / Q000523:psychology; D000328:Adult; D000368:Aged; D017028:Caregivers / Q000523:psychology / Q000639:trends; D015331:Cohort Studies; D003866:Depressive Disorder / Q000453:epidemiology* / Q000523:psychology*; D004185:Disability Evaluation; D018450:Disease Progression; D005260:Female; D006306:Health Surveys; D006699:Home Care Services / Q000706:statistics & numerical data / Q000639:trends; D006801:Humans; D008137:Longitudinal Studies; D008297:Male; D008875:Middle Aged; D009103:Multiple Sclerosis / Q000451:nursing / Q000503:physiopathology / Q000523:psychology*; D017060:Patient Satisfaction / Q000706:statistics & numerical data; D011788:Quality of Life / Q000523:psychology; D011795:Surveys and Questionnaires