COSMIN database

Psychometric properties of carer-reported outcome measures in palliative care: A systematic review

Michels, C. T., Boulton, M., Adams, A., Wee, B., and Peters, M.
BACKGROUND: Informal carers face many challenges in caring for patients with palliative care needs. Selecting suitable valid and reliable outcome measures to determine the impact of caring and carers' outcomes is a common problem.

AIM: To identify outcome measures used for informal carers looking after patients with palliative care needs, and to evaluate the measures' psychometric properties.

DESIGN: A systematic review was conducted. The studies identified were evaluated by independent reviewers (C.T.J.M., M.B., M.P.). Data regarding study characteristics and psychometric properties of the measures were extracted and evaluated. Good psychometric properties indicate a high-quality measure.

DATA SOURCES: The search was conducted, unrestricted to publication year, in the following electronic databases: Applied Social Sciences Index and Abstracts, Cumulative Index to Nursing and Allied Health Literature, The Cochrane Library, EMBASE, PubMed, PsycINFO, Social Sciences Citation Index and Sociological Abstracts.

RESULTS: Our systematic search revealed 4505 potential relevant studies, of which 112 studies met the inclusion criteria using 38 carer measures for informal carers of patients with palliative care needs. Psychometric properties were reported in only 46% (n = 52) of the studies, in relation to 24 measures. Where psychometric data were reported, the focus was mainly on internal consistency (n = 45, 87%), construct validity (n = 27, 52%) and/or reliability (n = 14, 27%). Of these, 24 measures, only four (17%) had been formally validated in informal carers in palliative care.

CONCLUSION: A broad range of outcome measures have been used for informal carers of patients with palliative care needs. Little formal psychometric testing has been undertaken. Furthermore, development and refinement of measures in this field is required.
Palliat Med
Publication year:
Symptom status:
Emotional state
Overall quality of life:
Overall quality of life
Adults (18-65)
Codes for special purposes
PRO / non-PRO:
Non-patient Reported Outcome
Type of measurement instrument:
1 - Questionnaires
AQOL-EOL - Assessment Quality of life–End of life–Spouses
BASC - Brief Assessment Scale for Caregivers
BCOS: Bakas Caregiving Outcomes Scale (versions: BCOS-15)
BIC - Burden Index of Caregivers
BSFC - Burden Scale for Family Caregivers (versions: BSFC-s)
CBI - Caregiver Burden Inventory
CBS - Caregiver Burden Scale
CBS-EOLC - Caregiver’s Burden Scale in end-of-life care
CIS - Caregiving Impact Scale
CoH-QoL-F - City of Hope Quality of Life Tool-Family version
CQOLC - Caregiver Quality of Life Index–Cancer (versions: CQOLC-LT - CQOLC-Liver Transplant)
CQOLI - Caregiver Quality of Life Index (versions: CQOLI-R)
CRA - Caregiver Reaction Assessment   
CSI - Caregiver Strain Index (versions: MCSI-1;MCSI-2; CSI expanded )   
EORTC QLQ-C30 - European Organization for Research and Treatment of Cancer Quality of Life Questionnaires Core-30 item (versions: EORTC QLQ-C24)   
EQ-5D - EuroQoL-5 Dimensions   
FACQ-PC - Family Appraisal of Caregiving Questionnaire for Palliative Care
FACS - Feelings about Caregiving Scale
FACT - Functional Assessment of Cancer Therapy
FSQ - Family Strain Questionnaire (versions: FSQ-SF)
HP - Hausliche Pflegeskala
HQLI - Hospice Quality of Life Index
MBCBS - Montgomery Borgatta Caregiver Burden Scale
MQOL - McGill Quality of Life Questionnaire [alias: McGill QoL] (also: MQOL-CSF - MQOL-Cardiff Short form)
MS - Montgomery Scale
QOL-family - quality of life-family
QOLI - Lehman Quality of Life Interview/Index
QoLLTI - Quality of Life in Life-Threatening Illness (versions: QoLLTI-F – Family Carer; QoLLTI-P - patient)
QoLS - Quality of Life Scale
RCAS - Revised Caregiving Appraisal Scale
SF-12 - 12-item Short Form Health Survey [alias: RAND-12]
SF-36 - 36-item Short Form Health Survey [alias: RAND-36][alias: Medical Outcomes Study (MOS) SF-36]]    |  | also see:
SF-8 - 8-item Short Form Health Survey [alias: Medical Outcomes Study (MOS) SF-8]
SWED-QOL - Swedish Health-Related QOL Survey
WHOQOL-BREF (Dialysis)
WHOQOL - World Health Organization Quality of Life Assessment (versions: WHOQOL-26)
ZBI - Zarit Burden Interview (versions: ZBI-SF)