Online crowdfunding for medical expenses related to hidradenitis suppurativa

Zheng, David X.; Mulligan, Kathleen; Marin, Benjamin Gallo; Cullison, Christopher R.; Cwalina, Thomas B.; Beveridge, Mara; Linos, Eleni; Scott, Jeffrey F.

doi:10.1111/ced.14955

Cited by 6 publications

(4 citation statements)

References 5 publications

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“…Frequent travel was also commonly reported to negatively impact a family's ability to maintain regular employment, with loss of income reported in nearly half of caregivers. Compared to a similar crowdsourcing study for hidradenitis suppurativa, 4 campaigns for JDM were more likely to be fundraising for treatment‐related travel (27.5% vs. 16.2%) and somewhat less often for direct medical treatment (65.0% vs. 72.9%). Based on the high prevalence of travel‐related costs, alternative strategies for care, such as incorporation of telehealth and home‐based treatments, may be beneficial.…”

Section: Discussionmentioning

confidence: 72%

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Crowdsourcing as a means of fundraising for juvenile dermatomyositis

Goldman

Kassamali

Shahriari

et al. 2022

Pediatric Dermatology

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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

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Section: Discussionmentioning

confidence: 72%

“…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 …”

Section: Introductionmentioning

confidence: 99%

Crowdsourcing as a means of fundraising for juvenile dermatomyositis

Goldman

Kassamali

Shahriari

et al. 2022

Pediatric Dermatology

View full text Add to dashboard Cite

show abstract

“…1,2 To better understand the financial and psychosocial burdens of inflammatory skin disease, we sought to explore the use of fundraiser campaigns for these conditions on the publicly available crowdfunding website GoFundMe. Although previous research has characterized crowdfunding for individual dermatologic diseases, 3,4 this study intended to compare data among common inflammatory skin conditions to determine the differences in psychologic distress, out-of-pocket costs, and social factors contributing to financial burden.Fundraising campaigns were identified on the GoFundMe website using standard search functionality and included if the campaign was primarily raising funds for individual expenses for a person diagnosed with hidradenitis suppurativa (HS), atopic dermatitis (AD), psoriasis, or vitiligo (Supplementary Fig 1, available via Mendeley at https://data.mendeley.com/datasets/tnxx8g64mj/1). In total, 141, 173, 213, and 14 campaigns met the *Determined after 6 months of campaign activity.…”

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confidence: 99%

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confidence: 99%