Medical Crowdfunding and Access to Care in Patients Undergoing Cleft Lip & Palate Surgery
Ronald K. Akiki, BA1, Charles C. Jehle, MD2, Marten Basta, MD2, Joseph Crozier, MA2, Michael K. Boyajian, BA1, Albert S. Woo, MD2.
1The Warren Alpert Medical School of Brown University, Providence, RI, USA, 2Division of Plastic and Reconstructive Surgery, Brown University, Providence, RI, USA.
PURPOSE: Currently, a total of 163 ACPA approved teams treat cleft deformities in the United States. These centers are unevenly distributed, and families often travel long distances and pay extra costs to consult a multidisciplinary cleft team for treatment.Throughout the past decade, online medical crowdfunding has gained popularity. Patients experiencing hardships are able to create campaigns on websites such as GoFundMe to advertise fundraisers to potential donors through social media. Studies in medical crowdfunding may provide insight into the demographics of patients with the greatest need in the care of orofacial cleft. In this study, we sought to establish whether there is a correlation between patients asking for support for cleft lip and/or palate treatment and their geographic location in the US.
METHODS: 635 crowdfunding campaigns for cleft lip and/or palate were reviewed from GoFundMe Inc. Titles, descriptions, amount raised, goal, number of likes, shares, donors, and location were collected. Descriptive statistics were generated by geographic location and were adjusted for population size. Google Trends Search Volumes were calculated for the terms "Cleft Lip" and "Cleft Palate" and "Cleft Lip and Palate." Search volumes were reported as Relative Search Volumes (RSV), which are scaled scores between 0 and 100 showing how frequently a search term is entered into Google's search engine. We located all approved cleft centers using the ACPA website (cleftline.org). Cleft prevalences were collected from the National Center of Birth Defects and Developmental Disabilities. Spearman's rank and Pearson's correlation tests were used to assess the relationship between RSV scores, number of approved teams, and number of campaigns.
RESULTS: Analysis showed that the number of approved teams per state was inversely correlated to both RSV (Relative Search Volume) scores (p=0.048) and the number of campaigns (p<0.0001). North Dakota had the highest number of campaigns (9.23 per million), and the third highest RSV (90) with no ACPA approved centers. Similarly, the highest search volumes were in South Dakota and Wyoming (100 and 92 RSV, respectively), and both of these states had limited access to cleft teams (no approved centers in Wyoming, and only one in South Dakota). Among the states with available prevalence data, Alaska and Indiana had the highest prevalences (15.95 and 9.04 per 10,000 live births, respectively) with no approved ACPA teams in Alaska and two approved teams in Indiana.
CONCLUSION: Fewer ACPA centers in a given state may suggest a lower access to care. We found that states with low numbers of cleft centers had a higher number of GoFundMe campaigns and higher search volumes for cleft lip and/or palate. It appears that greater campaign numbers and greater search volumes may reflect a greater patient need for orofacial care.
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