一项社区多发性硬化症患者队列及其相关人员自我健康趋向评估的纵向研究

来源 :世界核心医学期刊文摘(神经病学分册) | 被引量 : 0次 | 上传用户:sxj007
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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.
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