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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. Objectives: 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.
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. Objectives: We prospectively assess 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 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 A significant other was available for 74% of responders. The proportion requires constant bilateral walking assistance increased from 16% to 33%. The proportion using housing adaptati ons 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 keep mild over a median duration of 11 years. The psychological diet affects not only people with MS but also their significant others.