Objective: To evaluate long- term effects of an inpatient rehabilitation course in dystonia.

Background: The participants immediate feedback after the rehabilitation course is positive and they find meeting persons with the same disease important. However, little is known about the long-term effects.

Methods: The sample was gathered by postal survey, among applicants for five to ten-days dystonia courses organised by the Finnish Parkinson Association (2006 -2009). The first survey was sent to all applicants before attending a course and another survey six months later to those who answered to the first survey. Because of a large amount of applicants, part of them had to wait for a later course. Questions concerned dystonia-related stigma, disability, depression and quality of life. Because other significant changes in life may also affect, there were questions if specific life events (e.g. divorce) had happened after the baseline questionnaire. The changes between the two surveys were compared among those who had already participated a course and those who were waiting for their course.

Results: Of all applicants, 117 of 226 (52%) answered the baseline questionnaire and 100 (85%) of them the follow-up questionnaire: 79 had participated in a course and 21 were waiting their place. In both groups most were women: 63 (80%) and 19 (90.5%); the mean (SD) age was 54 (9.4) yrs. vs. 55 (6.9) yrs. and the time after diagnosis 5 (6.9) yrs. vs. 5 (4.8) yrs. There were no significant changes between the baseline and follow-up in dystonia associated stigma, in the TWSTRS disability score, quality of life (assessed by 15D) or treatment. However, the self-assessed overall ability in everyday life was more often improved among the participants compared to those waiting for a course (p<0.01). The mood (GDS sum score) was more improved among the participants (p<0.01). Among those course participants who had no significant life changes, the effect size of improvement of the GDS sum score was 0.57, compared to 0.24 among those waiting for a course. Changes of the caregiver burden were correlated with the participant´s GDS change, although the caregiver did not participate in the course.

Conclusions: The long-term effects of short inpatient rehabilitation and peer support were seen in improved mood and subjective ability in everyday life. The mood changes also seem to reflect the caregiver burden.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/long-term-effects-of-a-short-inpatient-rehabilitation-course-and-peer-support-in-dystonia/