Patient-reported outcome measures for cancer caregivers: a systematic review

Shilling, Valerie, Matthews, Lucy, Jenkins, Valerie and Fallowfield, Lesley (2016) Patient-reported outcome measures for cancer caregivers: a systematic review. Quality of Life Research, 25 (8). pp. 1859-1876. ISSN 0962-9343

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Abstract

Purpose
Informal caregivers provide invaluable help and support to people with cancer. As treatments extend survival and the potential burdens on carers increase, there is a need to assess the impact of the role. This systematic review identified instruments that measure the impact of caregiving, evaluated their psychometric performance specifically in cancer and appraised the content.
Methods
A 2-stage search strategy was employed to: 1. identify instruments that measure the impact of caregiving, 2. run individual searches on each measure to identify publications evaluating psychometric performance in the target population. Searches were conducted in Medline, Embase, CINAHL and Psychinfo and restricted to English for instrument used and article language. Psychometric performance was evaluated for content and construct validity, internal consistency, test-retest reliability, precision, responsiveness and acceptability. Individual scale items were extracted and systematically categorised into conceptual domains.
Results
10 papers were included reporting on the psychometric properties of 8 measures. Although construct validity and internal consistency were most frequently evaluated, no study comprehensively evaluated all relevant properties. Few studies met our inclusion criteria so it was not possible to consider the psychometric performance of the measures across a group of studies. Content analysis resulted in 16 domains with 5 overarching themes: lifestyle disruption; wellbeing; health of the caregiver; managing the situation and relationships.
Conclusions
Few measures of caregiver impact have been subject to psychometric evaluation in cancer caregivers. Those that have do not capture well changes in roles and responsibilities within the family and career, indicating the need for a new instrument.

Item Type: Article
Keywords: Caregivers, cancer, outcome measures, impact, burden, psychometric performance
Schools and Departments: Brighton and Sussex Medical School > Sussex Health Outcomes Research & Education in Cancer (SHORE-C)
Subjects: R Medicine
R Medicine > R Medicine (General) > R852 Research. Experimentation
R Medicine > RC Internal medicine > RC0254 Neoplasms. Tumors. Oncology Including cancer and carcinogens
Depositing User: Kathryn Monson
Date Deposited: 15 Mar 2016 12:37
Last Modified: 15 Mar 2017 03:21
URI: http://sro.sussex.ac.uk/id/eprint/60043

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Project NameSussex Project NumberFunderFunder Ref
UnsetG1625-05Bristol-Myers SquibbUnset