Recruitment

Recruitment Status
Completed
Estimated Enrollment
50

Inclusion Criteria

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; to this end, motivational interviewing will be used (including a advantages/disadvantages matrix; a visual analogue scale (VAS) to rate the importance of participation in de program; and a VAS to rate the confidence a patient has that participation in the program is feasible)
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 severely fatigued
...
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; to this end, motivational interviewing will be used (including a advantages/disadvantages matrix; a visual analogue scale (VAS) to rate the importance of participation in de program; and a VAS to rate the confidence a patient has that participation in the program is feasible)
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 severely fatigued
formal diagnosis of muscular disease, either FascioScapuloHumeral Dystrophy (FSHD), Inclusion Body Myositis (IBM), Mitochondrial Myopathy (MM) or any other;
being able to formulate at least 3 individual participation goals during the interview with the occupational therapist.

Exclusion Criteria

a travel distance perceived as too burdensome
having participated in the Energetic program before
severe co-morbid condition,
...
a travel distance perceived as too burdensome
having participated in the Energetic program before
severe co-morbid condition,
active depression or other psychiatric disorder as indicated by a consultant psychologist or by the medical history,
pregnancy,

Summary

Conditions
Neuromuscular Diseases
Type
Interventional
Design
  • Allocation: Randomized
  • Intervention Model: Parallel Assignment
  • Masking: Single (Outcomes Assessor)
  • Primary Purpose: Treatment

Participation Requirements

Age
Between 18 years and 85 years
Gender
Both males and females

Inclusion Criteria

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; to this end, motivational interviewing will be used (including a advantages/disadvantages matrix; a visual analogue scale (VAS) to rate the importance of participation in de program; and a VAS to rate the confidence a patient has that participation in the program is feasible)
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 severely fatigued
...
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; to this end, motivational interviewing will be used (including a advantages/disadvantages matrix; a visual analogue scale (VAS) to rate the importance of participation in de program; and a VAS to rate the confidence a patient has that participation in the program is feasible)
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 severely fatigued
formal diagnosis of muscular disease, either FascioScapuloHumeral Dystrophy (FSHD), Inclusion Body Myositis (IBM), Mitochondrial Myopathy (MM) or any other;
being able to formulate at least 3 individual participation goals during the interview with the occupational therapist.

Exclusion Criteria

a travel distance perceived as too burdensome
having participated in the Energetic program before
severe co-morbid condition,
...
a travel distance perceived as too burdensome
having participated in the Energetic program before
severe co-morbid condition,
active depression or other psychiatric disorder as indicated by a consultant psychologist or by the medical history,
pregnancy,

Tracking Information

NCT #
NCT02208687
Collaborators
  • ZonMw: The Netherlands Organisation for Health Research and Development
  • Revalidatiefonds Nederland
  • Center of expertise Sneller herstel
Investigators
  • Principal Investigator: Edith Cup, dr. Radboudumc, department Rehabilitation
  • Edith Cup, dr. Radboudumc, department Rehabilitation