Table 3 Outcome measures for caregivers which will be measured at baseline, 12 and 24 months
Domain | Outcome | Measurement tool/method, where one is available |
|---|---|---|
Caregiver measures | Care-related quality of life | Carer Experience Scale (primary outcome) [20] |
Caregiver quality of life (PD-specific) | Parkinson’s Disease Questionnaire for carers (PDQ-carer) [50] | |
Caregiver burden | Zarit Burden Interview [51] | |
Caregiver activation level | Patient Activation Measure 13 UK (CG-PAM) [41] | |
Caregiver coping strategy | BriefCOPE [38] | |
Care (including relationship to recipient, living with recipient, intensity of caring, duration of care duties, tasks of caring) | N/A | |
Health | Frailty | Survey of Health, Ageing, and Retirement in Europe (SHARE-FI) 75+ [25] |
Sarcopenia | SARC-F and SARC-CalF [28] | |
Malnutrition risk | Malnutrition Universal Screening Tool (MUST) | |
Nutritional risk | Seniors in the community: risk Evaluation for Eating and Nutrition (SCREEN II)-14 item version [29, 30] | |
Performance | Physical performance | Short physical performance battery (SPPB) Time up and go test (TUG) |
Physical activity | Incidental and Planned Exercise Questionnaire for the Usual week (IPEQ-WA) [32] | |
Grip strength | Hand-held dynamometer | |
Social | Loneliness/social isolation | 3-item Revised-UCLA Loneliness Scale plus a single item direct measure of loneliness [35] |
Economic measures | Caregiver costs | The Caregiver Indirect and Informal Case Cost Assessment Questionnaire [52] |
Process measures | Frequency and type of engagement with PRIME Parkinson care (intervention arm) | N/A |