Crowdsourcing as a means of fundraising for juvenile dermatomyositis

Abstract

Juvenile dermatomyositis (JDM) is a rare, idiopathic inflammatory myopathy with an annual incidence ranging between 2 and 4 per million children. Previous research indicates significant financial and psychological hardship in patients and caregivers of orphan diseases. 1,2 These burdens can complicate treatment goals, and their full extent often goes unrecognized and therefore unaddressed by medical providers. Previous studies have analyzed the use of crowdsourcing for more common dermatological diseases. 3,4 This study utilizes publicly available information published on the crowdsourcing platform GoFundMe to characterize how this platform is being used to address the financial and psychological burden associated with this rare illness. | ME THODSForty-eight campaigns were identified using the GoFundMe internal search engine for JDM from 2013 to 2021. Campaign narratives in the fundraising description and "Updates" sections were qualitatively analyzed for common characteristics. A codebook was then created to collect information on reported demographics, fundraising goal/money raised, and common themes related to expenses and sources of financial hardship. Major themes for expenses were organized into three fundraising categories: medical care expenses (e.g., medical bills, travel expenses for medical visits), JDM research, and expenses not directly related to disease management (e.g., college fund, family vacation). All financial data were converted to USD based on current exchange rates. Data collection was completed on 8/27/21. | RE SULTSIn total, 83.3% (n = 40), 10.4% (n = 5), and 6.3% (n = 3) of campaigns were fundraising for medical care expenses for JDM, nondisease management expenses, and JDM research, respectively.Patient age ranged from 2 to 23 years old with a median age of 8 years. Specific campaign characteristics are recorded in Table 1.For campaigns fundraising for medical care expenses for JDM, the most cited expenses were treatment/medical bills (65.0%; n = 26), travel for medical care (27.5%; n = 11), and mobility/home renovations, for example, ramp to enter home (15.0%; n = 6). While only