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Titre : | Progressive Decline in Daily and Social Activities: A 9-year Longitudinal Study of Participation in Myotonic Dystrophy Type 1 (2019) |
Auteurs : | Kateri Raymond ; Mélanie Levasseur ; Jean Mathieu |
Type de document : | Article |
Dans : | Archives of Physical Medicine and Rehabilitation (Vol. 100, n° 9, 2019) |
Article en page(s) : | p. 1629-1639 |
Langues: | Anglais |
Descripteurs : |
HE Vinci Activités de la vie quotidienne ; Dystrophie myotonique ; Etudes longitudinales ; Participation sociale ; Rééducation et réadaptation |
Résumé : |
Objective
To describe and compare changes in participation over a 9-year period in women and men with myotonic dystrophy type 1 (DM1). To compare participation restrictions with available reference values from a typical aging population living in the community. Design Descriptive longitudinal design comparing data from baseline (2002) with data from follow-up (2011). Setting Neuromuscular clinic and participants home. Participants Adults with DM1 participated in the follow-up study (N=115). Interventions Not applicable. Main Outcome Measure The Assessment of Life Habits measured participation in 10 domains of daily and social activities. The minimal clinically important difference is 0.5 on a 10-point scale for participation accomplishment level. Results A total of 62% of participants were women, and the mean age was 52.3±10.3 years. A decline (P<.01 was observed with increasing difficulty and assistance required in global participation sd social activities subscore nutrition fitness personal care mobility community life recreation more areas are disrupted over time: domains were below reference values from a population aged years at follow-up compared baseline. satisfaction remains high stable time.> Conclusion As disease duration increases, global participation and more daily and social domains were restricted with increasing difficulty and assistance required. Adults with DM1 showed not only age-associated but disease-specific changes in participation. Description over time of participation could improve clinical assessment and guide interdisciplinary management of DM1, leading to higher rehabilitation success. Further investigation of the factors influencing changes in participation is required to support disease management and services planning. |
Disponible en ligne : | Oui |
En ligne : | https://login.ezproxy.vinci.be/login?url=https://www.sciencedirect.com/science/article/pii/S0003999319301480 |