Energetic, a self-managment group program aimed at reconditioning and participation in persons with an muscle disease; a randomized controle trial. - The Energetic study

niversitair Medisch Centrum Sint Radboud0 个研究点目标入组 50 人开始时间: 待定最近更新: 2024年4月23日

适应症

试验速览

暂无简介。

•-Adults between 18 and 65 years of age
•- Having one of the following muscle diseases: FascioScapuloHumeral Dystrophy (FSHD), Inclusion Body Myositis (IBM), or Mitochondrial Myopathy (MM) (n=30) or other neuromuscular diseases (n=20)
•- Being severely fatigued (CIS-fatigue > 35);
•-Being cardiopulmonary stable and capable of aerobic training (as determined using a Submaximal cycling exercise test with ECG (electrocardiography) and advice from a consultant cardiologist and pulmonologist);
•- Being motivated, committed to the program and *ready to change* which is discussed with the patient during the screening by a rehabilitation physician and an occupational therapist; using motivational interviewing tools (advantages /disadvantages matrix; a visual analogue scale, VAS, to rate the importance of participation in de program and a VAS to rate the confidence the
•patient has that participation in the program is feasible for them)
•- Being able to formulate at least 2 individual participation goals during the interview with the occupational therapist.

•- Active depression or other psychiatric disorder as indicated by a consultant psychologist or by the medical history.
•- Pregnancy,
•- Limited life expectancy (< 5 years) due to known co-morbidity.

发起方

niversitair Medisch Centrum Sint Radboud