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Improved autonomy and self-efficacy in people with multiple sclerosis after Can Do Training with Partners
P. Jongen, R. Ruimschotel, M. Heerings, L. Duyverman, L. Visser, J. Vissers, H. Wolper, A. Hussaarts, M. van Droffelaar, G. Borm, A. Van der Zande (Nijmegen, Rotterdam, Maassluis, Tilburg, NL)
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Introduction. In people with (Pw) multiple sclerosis (MS) functional and cognitive impairments lead to negative experiences and disappointments, which decrease autonomy and self-efficacy. Self-efficacy correlates with level of physical activity and psychological well being. Loss of autonomy or self-efficacy negatively affects health-related quality of life (HR-QoL). In an observational study in the U.S.A. (Mellen Centre, Cleveland, Ohio) a multidisciplinary 4-day Can Do Training (CDT) in PwMS was followed by improved self-efficacy during 3-6 months (Kennedy et al. 2009). Given societal and cultural differences and the importance of partners, we modified the CDT concept into a 3-day CDT with partner participation.
Methods. CDT was given in 5 weekends by an experienced multidisciplinary team, including a psychiatrist, MS nurse, psychiatric nurse, physiotherapist, yoga teacher, speech therapist and neurologist to 50 PwMS and their partners. Primary outcomes. Impact on Participation and Autonomy-32 (IPA-32) questionnaire score, encompassing the domains Indoor Autonomy, Family Role, Outdoor Autonomy, Social Relations, Education and Learning; domain scores range from 0 (very good) to 4 (bad); domain means give the IPA-32 score. Self-efficacy: 9-item MS Self-Efficacy Function (MSSE-F) and 9-item Control (MSSE-C) scales, both ranging from 0 to 100. Secondary outcomes: HR-QoL (MSQoL-54), fatigue (Modified Fatigue Impact Scale-5). Assessment schedule: -4 weeks, -1 week, 4 weeks, 3 months and 6 months.
Results. Preliminary results: Primary outcomes in 20 PwMS at 6 months after CDT: Mean (standard deviation [SD]) values for IPA-32 score at -4 weeks, -1 week, 4 weeks, 3 months and 6 months: 3.02 (0.44), 2.80 (0.40), 2.88 (0.48), 2.40 (0.84) and 2.09 (0.58); relative change to baseline -1%, -17% and -28%. MSSE-F values 60 (20), 64 (25), 62 (19), 68 (22) and 81 (14); relative change to baseline -1%, +9%, and +31%. MSSE-C values 47 (17), 45 (18), 47 (15), 53 (20.) and 67 (12); relative change to baseline +3%, +16%, +47%.
Conclusion. In a preliminary analysis we observed increased autonomy (+28%) and self-efficacy (+31%; +47%) 6 months after 3-day CDT with partners. Improvement was absent at 4 weeks, detectable at 3 months and continued up to 6 months. Complete results are presented at the congress. A controlled trial starts Q3 2012.
P. Jongen, R. Ruimschotel, M. Heerings, L. Duyverman, L. Visser, J. Vissers, H. Wolper, A. Hussaarts, M. van Droffelaar, G. Borm, A. Van der Zande (Nijmegen, Rotterdam, Maassluis, Tilburg, NL)
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Introduction. In people with (Pw) multiple sclerosis (MS) functional and cognitive impairments lead to negative experiences and disappointments, which decrease autonomy and self-efficacy. Self-efficacy correlates with level of physical activity and psychological well being. Loss of autonomy or self-efficacy negatively affects health-related quality of life (HR-QoL). In an observational study in the U.S.A. (Mellen Centre, Cleveland, Ohio) a multidisciplinary 4-day Can Do Training (CDT) in PwMS was followed by improved self-efficacy during 3-6 months (Kennedy et al. 2009). Given societal and cultural differences and the importance of partners, we modified the CDT concept into a 3-day CDT with partner participation.
Methods. CDT was given in 5 weekends by an experienced multidisciplinary team, including a psychiatrist, MS nurse, psychiatric nurse, physiotherapist, yoga teacher, speech therapist and neurologist to 50 PwMS and their partners. Primary outcomes. Impact on Participation and Autonomy-32 (IPA-32) questionnaire score, encompassing the domains Indoor Autonomy, Family Role, Outdoor Autonomy, Social Relations, Education and Learning; domain scores range from 0 (very good) to 4 (bad); domain means give the IPA-32 score. Self-efficacy: 9-item MS Self-Efficacy Function (MSSE-F) and 9-item Control (MSSE-C) scales, both ranging from 0 to 100. Secondary outcomes: HR-QoL (MSQoL-54), fatigue (Modified Fatigue Impact Scale-5). Assessment schedule: -4 weeks, -1 week, 4 weeks, 3 months and 6 months.
Results. Preliminary results: Primary outcomes in 20 PwMS at 6 months after CDT: Mean (standard deviation [SD]) values for IPA-32 score at -4 weeks, -1 week, 4 weeks, 3 months and 6 months: 3.02 (0.44), 2.80 (0.40), 2.88 (0.48), 2.40 (0.84) and 2.09 (0.58); relative change to baseline -1%, -17% and -28%. MSSE-F values 60 (20), 64 (25), 62 (19), 68 (22) and 81 (14); relative change to baseline -1%, +9%, and +31%. MSSE-C values 47 (17), 45 (18), 47 (15), 53 (20.) and 67 (12); relative change to baseline +3%, +16%, +47%.
Conclusion. In a preliminary analysis we observed increased autonomy (+28%) and self-efficacy (+31%; +47%) 6 months after 3-day CDT with partners. Improvement was absent at 4 weeks, detectable at 3 months and continued up to 6 months. Complete results are presented at the congress. A controlled trial starts Q3 2012.