Characteristics of the included studies
| Carer QOL Instrument | Author(s) | Country | Sample Total N (% female) Mean age years (SD) | Study design/setting | Measurement domains | Number of items/response format |
|---|---|---|---|---|---|---|
| HDQoL-C | Aubeeluck and Buchanan17 | UK | 87 (62.1) 58.2 (14.2) | Longitudinal/cohort: spousal carers recruited through the Huntington's Disease Association UK | Demographic and objective information; practical aspects of caregiving; satisfaction with life; feelings about living with Huntington's disease | 34 items 11-point Likert scale |
| HDQoL-C-SF | Aubeeluck et al18 | France Italy | 301 (60.5) 57.1 (13.1) | Cross-sectional survey: family or friend carers of people with Huntington's disease | Satisfaction with life; feelings about living with Huntington's disease | 20 items 11-point Likert scale |
| CAREQOL-MS | Benito-Leon et al19 | Spain | 276 (56.5) 50.2 (12.6) | Longitudinal/cohort: family carers of people with MS recruited from 19 Spanish outpatient clinics | Physical burden and global health; social impact; emotional impact; need of support; emotional reactions to patient's psychic status | 24 items 5-point Likert scale |
| ACQLI | Doward20 | UK France Germany Italy Spain | 192 (72.3) 60.0 (12.2) | Longitudinal/cohort: family carers of people with dementia | Single domain of carer QOL | 30 items Dichotomous (true/not true) |
| PDQ-Carer | Jenkinson et al21 | UK | 236 (63.5) 68.2 (9.5) | Cross-sectional survey: family carers of people with Parkinson's disease who were members of Parkinson's UK | Social and personal activities; anxiety and depression; self-care; stress | 29 items 5-point Likert scale |
| PDQ-Carer-SI | Morley et al23 | UK | 236 (63.5) 68.2 (9.5) | Cross-sectional survey: family carers of people with Parkinson's disease who were members of Parkinson's UK | Single summary index score computed using the four subscales of the PDQ-Carer | 29 items 5-point Likert scale |
| PQoL Carers | Pillas et al22 | UK | 430 (62.4) 66.2 (8.5) | Cross-sectional survey: family carers of people with MSA and PSP | Single domain of carer QOL | 26 items 5-point Likert scale |
| CGQOL | Vickrey et al6 | USA | 200 (79.0) 61.5 (13.5) | Longitudinal/cohort: family carers of people with dementia | Assistance with instrumental activities of daily living; assistance with activities of daily living; role limitations due to caregiving; personal time; family interaction; demands of caregiving; worry; spirituality and faith; benefits of caregiving; caregiver feelings | 80 items 3-point and 5-point Likert scales specific to groups of items |
ACQLI, Alzheimer's Carers Quality of Life Instrument; CGQOL, Caregiver Quality Of Life; HDQoL-C, Huntington's disease quality-of-life battery for carers; HDQoL-C-SF, Huntington's disease quality-of-life battery for carers short form; MS, multiple sclerosis; MSA,multiple system atrophy; PDQ-Carer, Parkinson Disease Questionnaire for Carers; PDQ-Carer-SI, Parkinson Disease Questionnaire for Carers Summary Index; PQoL Carers, Parkinsonism Carers QoL; PSP,progressive supranuclear palsy; QOL, quality of life.