Family caregiver constructs and outcome measures in neuro-oncology: A systematic review

BACKGROUND

As a first step to reach consensus on the key constructs and outcomes in neuro-oncology caregiver research, we performed a systematic review to evaluate the constructs that are being evaluated in research studies and how these have been assessed.

METHODS

All peer-reviewed publications with primary data reporting on outcomes of family caregivers of adult primary brain tumour patients were eligible. Electronic databases PubMed/ Medline, Embase, Web of Science, Emcare, Cochrane Library, and PsycINFO were searched up to September 2021. Using Covidence, title and abstract screening, full text review, and data extraction were done by two researchers independently, with a third guiding consensus. Constructs as reported in each study, and how these were assessed were the primary result.

RESULTS

Searches yielded 1090 unique records, with 213 remaining after title/abstract screening. Of these, 157 publications met inclusion criteria, comprising 120 unique studies. These originated from 18 countries and were published between 1996-2022. Most were observational (75%) cross-sectional (61%) studies, reporting on quantitative methods (62%). Twenty-seven different constructs were assessed and mapped along the Caregiver Health Model categories: caregiver health, needs, tasks, beliefs and attitudes, and environment. Seventeen questionnaires were used > 2 times to measure the same construct, with the vast majority of questionnaires only used across one or two studies.

CONCLUSIONS

Neuro-oncology caregiving research is a field gaining traction, but lags behind in clear definition of key constructs, and consistency in assessment of these constructs. Developing consensus or guidance will improve comparability of studies, meta-analyses, and advance the science more quickly.