Self-assessed health status changes in a community cohort of people with multiple sclerosis: 11 years of follow-up
Version of Record online: 6 DEC 2012
© 2012 The Author(s) European Journal of Neurology © 2012 EFNS
European Journal of Neurology
Volume 20, Issue 4, pages 681–688, April 2013
How to Cite
Giordano, A., Ferrari, G., Radice, D., Randi, G., Bisanti, L., Solari, A. and the POSMOS study (2013), Self-assessed health status changes in a community cohort of people with multiple sclerosis: 11 years of follow-up. European Journal of Neurology, 20: 681–688. doi: 10.1111/ene.12028
- Issue online: 12 MAR 2013
- Version of Record online: 6 DEC 2012
- Manuscript Accepted: 4 OCT 2012
- Manuscript Received: 19 JUN 2012
- Italian Ministry of Health and Universities. Grant Number: 96/J/T55
- Fondazione Italiana Sclerosi Multipla. Grant Numbers: 2002/R/50, 2009/R/28
- longitudinal study;
- multiple sclerosis;
- patient-reported outcomes;
- quality of life
Background and purpose
Few data are available on the health status of people with multiple sclerosis (PwMS) in the community. We assessed changes in self-perceived health status and health related quality of life of a community-based cohort of PwMS over a decade, and identified predictors of such changes.
In 1999 we started the POSMOS study (Postal Survey of Self-Assessed Health of MS Adults and their Significant Others) on a random sample of 251 adults with MS from the Milan area (mean age 42 years, range 18–71 years), and prospectively assessed changes in self-perceived health status over 11 years. Participants completed the Multiple Sclerosis Quality-of-Life-54 (MSQOL-54) and a general/clinical questionnaire. We re-assessed the cohort in 2004 and 2010, sending the same questionnaires plus the Chicago Multiscale Depression Inventory.
There were 205 (86%) respondents in 2004, 171 (74%) in 2010; 28 (11%) died during the study. Severely impaired [self-determined Expanded Disability Status Scale (EDSS) > 6.5] increased from 19% to 32%. One-fifth remained fully ambulatory (EDSS < 4.0): 25% women (median age 44 years [interquartile range, IQR 39–53], median years from diagnosis 16 [IQR 12–19]); and 17% men (median age 40 years [IQR 38–45], median years from diagnosis 14 [IQR 12–17]). Changes in MSQOL-54 composite scores were negligible; but among individual scales, change in health, cognitive function and general health worsened, and social function and emotional wellbeing improved significantly. Depressive symptoms were high and stable.
Multiple sclerosis had a pervasive but inhomogeneous impact on the lives of our MS sufferers. Notwithstanding overall clinical deterioration and aging, hospital admissions and medical consultations decreased, suggesting reduced use of health care resources. By contrast, housing adaptations and home care increased, psychological burden was high and self-perceived cognitive functioning worsened.