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Table 3 Outcome measures

From: Effectiveness and cost-effectiveness of a self-management group program to improve social participation in patients with neuromuscular disease and chronic fatigue: protocol of the Energetic study

Participants

Outcome

Outcome measure

Patients

Primary outcome measure

 
 

Social participation – performance of occupations

Canadian Occupational Performance Measure, performance score (COPM-performance) [18-20]

 

Secondary outcome measures

 
 

Social participation- satisfaction with occupational performance

Canadian Occupational Performance Measure, satisfaction score (COPM-satisfaction) [18-20]

 

Fatigue impact and severity

Checklist Individual Strength - subscale Fatigue (CIS-Fatigue) [21]

 

Physical endurance

6-Minute Walking Test [22]

 

Activity engagement

Activity Card Sort (ACS) [23,24]

 

Self-efficacy

General Self-Efficacy Scale [26]

 

Mood

Hospital Anxiety and Depression Scale (HADS) [25]

 

Resource utilization

Self-developed resource utilization questionnaire

 

Health-related quality of life

Health-related Quality of Life: Short Form 36 (SF-36) [28]

Caregiver(s)

Perceived caregiver burden

Zarit Burden Interview (ZBI) [27]

 

Objective caregiver burden

Self-developed scale for objective care burden questionnaire; amount of care (hours)