Participant | Outcome measure | Instrument | baseline | 3 months | 6 months |
---|---|---|---|---|---|
Patient | Self-perceived performance in daily activitiesa | Canadian Occupational Performance Measure (COPM; performance rating) [25] | √ | √ | √ |
Self-perceived satisfaction with performance in daily activities | Canadian Occupational Performance Measure (COPM; satisfaction rating) [25] | √ | √ | √ | |
Objective performance in daily activities | Perceive Recall Plan Perform system (PRPP) [26] | √ | √ | - | |
Participation | √ | √ | - | ||
Utrecht Scale for Evaluation of Rehabilitation Participation (USER-P; satisfaction part) [29, 30] | √ | √ | √ | ||
Health-related quality of life | √ | √ | √ | ||
Impact of fatigue | √ | √ | √ | ||
Mood | Becks Depression Inventory (BDI) [36] | √ | √ | √ | |
Caregiver | Perceived caregiver burden | Zarit Burden Interview (ZBI) [37] | √ | √ | √ |
Objective caregiver burden | Objective care burden questionnaire; hours of care | √ | √ | √ | |
Mood | Hospital Anxiety and Depression Scale (HADS) [38] | √ | √ | √ | |
Both | Quality of life | Euroqol EQ-5 D [39] | √ | - | √ |
Quality of life overall | Visual Analogue Scale for Quality of life; VAS QoL | √ | √ | √ | |
Proactive coping | Utrecht Proactive Coping Competence scale (UPCC) [40] | √ | √ | √ | |
Resource utilization | Resource utilization questionnaire: patient and caregiver version | √ | √ | √ |