JMIR Publications

ABSTRACT

Background:

Persons diagnosed serious chronic illnesses and their caretakers experience multiple types of financial costs that burden their income and generate financial distress. Many turn to medical crowdfunding (MCF) to mitigate the harms of these costs on their health and quality of life.

Objective:

The purpose of this systematic scoping review is to summarize research of MCF for persons diagnosed with serious chronic illness regarding study designs and methods, responsible conduct of research practices, and study foci.

Methods:

This review was done in accordance with PRISMA guidelines. Eligible studies were conducted in high income countries per the World Bank and focused on beneficiaries diagnosed with serious chronic illness. Excluded studies focused on crowdfunding for medical research, charitable organizations, or had an economic perspective. Findings of the included studies were summarized as they related to the key concepts in a conceptual framework derived from Lazarus & Folkman’s stress, appraisal and coping framework and Santacroce & Kneipp’s conceptual model of financial toxicity in pediatric oncology.

Results:

Twenty-six studies were eligible for inclusion in the review. The main findings of the review included lack of integration of qualitative and quantitative approaches, and inconsistent reporting of responsible conduct of research practices. Included studies focused on financial stressors that contributed to financial burden, such as out-of-pocket payments of medical bills, basic living expenses, medical travel expenses, and lost income due to illness-related work disruptions. Few studies addressed appraisals of stressors are threatening, or adequacy of available resources. When mentioned, appraisal related to global financial struggle during the COVID-19 pandemic, or capacity of social network members to donate funds. Consequences of MCF included receipt of three forms of social support (tangible, informational & emotional support), privacy loss, embarrassment, and propagation of scientifically unsupported information. Studies found that friends and family tended to manage MCF campaigns. While most studies focused on monetary outcomes, a few concentrated on peoples’ experiences with MCF.

Conclusions:

The identified methodological gaps highlight the need for more robust and reproducible approaches to utilizing the copious data available on public MCF platforms. Integration of quantitative and qualitative methods will allow for nuanced explorations of the MCF experience. More consistent elaboration of strategies to promote responsible conduct of research is warranted in order to minimize risk to populations that are vulnerable and express concerns regarding loss of privacy. Lastly, examination of unanticipated consequences of MCF is critical development of future interventions to optimize existing supports while providing needed supports, financial and non-financial, that are lacking.