Effectiveness and Cost-effectiveness of the Energetic Program

Radboud University Medical Center

Status

Completed

Conditions

Neuromuscular Diseases

Treatments

Behavioral: Energetic

Other: Control group

Study type

Interventional

Funder types

Other

Identifiers

NCT02208687

2014/077

Details and patient eligibility

About

Fatigue is present in at least 60% of the patients with a muscle disease and can be the most disabling symptom. In combination with other impairments, this often results in low levels of physical activity and decreased social participation, leading to large societal costs. Energetic is a self-management group program aimed at improving participation and physical endurance in these patients. Our hypothesis is that Energetic results in improved participation and improved physical endurance, less experienced fatigue and better quality of life compared to usual care, without increasing health care costs.

Enrollment

53 patients

Sex

All

Ages

18 to 85 years old

Volunteers

No Healthy Volunteers

Inclusion criteria

formal diagnosis of muscular disease, either FascioScapuloHumeral Dystrophy (FSHD), Inclusion Body Myositis (IBM), Mitochondrial Myopathy (MM) or any other;
being severely fatigued
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; 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 able to formulate at least 3 individual participation goals during the interview with the occupational therapist.

Exclusion criteria

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