Measures of financial burden for families dealing with serious illness: A systematic review and analysis

Background: Many families coping with serious illness report experiencing financial burden, which negatively impacts coping and quality of life. Financial burden, however, is a complex construct that has been inconsistently operationalized in the literature. Aim: To review the available literature to identify, and describe the properties of, measurement tools or scales used to assess financial burden, including financial stress and strain, for families dealing with serious illness. Design: A systematic review. Data sources: Six databases were searched for articles published between 2006 and 2020. The review included studies in English, that reported empirical data, and used at least one measure of financial burden. To obtain a full copy of measures, an environmental scan was conducted. Results: A total of 31 measures were included. Only five of the total were designed for patient self-report, 23 of the total were designed for caregiver report. Whereas 11 measures relied on a single-item, 17 were multi-item. The remaining measures provided no information about target population and items. The most popular measures—based on Google Scholar citations—tended to only include one financial burden item. Given the complexity of financial burden, and its subjective and objective aspects, the utility of these single item measures remains questionable. Also, although patients may experience financial burden, there is a lack of patient-reported measures. Conclusion: To measure financial burden, we identified a need to develop and test multi-item measures, measures appropriate for patient populations and greater attention to the temporal aspects of self-report assessments.