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

Abstract

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.

A conceptual framework for understanding financial burden during serious illness

“…The financial burden among patients with life-threatening illness and caregivers has been defined and operationalized in a variety of ways. The existing approaches have largely focused on either the objective (e.g., debt vs. assets) or subjective (e.g., personal impressions of burden) components (Lee & Cagle, 2021). These definitions frequently do not capture the dynamic aspects of financial burden, such as worries about future financial issues or trajectories of burden over time.…”

“…Searching full copies of measures Based on the evidence from identified studies, we conducted general internet searches using Google and Google Scholar search engines by using a title of measurement tool or scale to retrieve full copies of identified financial burden measures. For example, to search a full copy of the Zarit Burden Interview, we applied the search term "Zarit Burden Interview" for Google and Google Scholar Note: (Lee & Cagle, 2021) for more detail about the review methodology and findings.…”

“…This paper synthesizes the existing scientific literature and builds off of a systematic review on the financial burden and measurement tools for patients and family caregivers coping with serious illness (Lee & Cagle, 2021) to construct an empirically derived model of this important concept. This conceptual framework also reflects the reality that patients and their caregivers are facing such as illness trajectories.…”

Ageing with Interstitial lung disease: preserving health and well being

“…Pre-COVID-19 loneliness measured in several countries suggested epidemic proportions in the ageing and those with chronic health conditions [137,139 ▪▪ ,140,141,142 ▪▪ ]. Loneliness, depression and mortality are accelerated to significant proportions in family caregivers as well as in many people living with ILD [132 ▪ ,143 ▪▪ ,144 ▪▪ ,145–149,150 ▪▪ ,151–154].…”

Health-Related Quality of Life (HRQoL) in Sarcoidosis: Diagnosis, Management, and Health Outcomes

“…Decreased strain, depression, and adverse outcomes result from targeted interventions, including stress-reduction strategies, education on caregiver strain, anticipatory stress, related depression, as well as empathetic communication [68], providing caregiver with available self-care resources. Advocacy for healthcare policy recognizes the financial and physical demands of caring for a loved one, such that practical frameworks might be instituted to support them [69,70].…”