Alessandra Solari1, Giusi Ferrari, Davide Radice. 1. Laboratory of Epidemiology, Istituto Nazionale Neurologico Carlo Besta, Via Celoria 11, 20133 Milan, Italy. solari@istituto-besta.it
Abstract
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 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.
Authors: Darija Kisic Tepavcevic; Tatjana Pekmezovic; Nebojsa Stojsavljevic; Jelena Kostic; Irena Dujmovic Basuroski; Sarlota Mesaros; Jelena Drulovic Journal: Qual Life Res Date: 2013-10-01 Impact factor: 4.147
Authors: Isabella Laura Simone; Antonia Ceccarelli; Carla Tortorella; Alessandra Bellacosa; Fabio Pellegrini; Immacolata Plasmati; Maria Fara De Caro; Mariangela Lopez; Francesco Girolamo; Paolo Livrea Journal: Health Qual Life Outcomes Date: 2006-12-12 Impact factor: 3.186