Social Media Methods for Studying Rare Diseases
Autor: | Kathleen A. Stringer, Ashley Shaver, Sunkyung Yu, Janet E. Donohue, Carlen G. Fifer, Kurt R. Schumacher, Brian J. Zikmund-Fisher, Caren S. Goldberg, Mark W. Russell, Regine L. Caruthers |
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Rok vydání: | 2014 |
Předmět: |
Male
Research design medicine.medical_specialty Pediatrics Adolescent Referral Research Subjects Protein-Losing Enteropathies Fontan Procedure Special Article Rare Diseases Surveys and Questionnaires medicine Humans Social media Modalities Consumer Health Information business.industry Health Surveys Online research methods United States Bronchitis Chronic Family medicine Pediatrics Perinatology and Child Health Cohort Female The Internet business Social Media Rare disease |
Zdroj: | Pediatrics. 133:e1345-e1353 |
ISSN: | 1098-4275 0031-4005 |
Popis: | For pediatric rare diseases, the number of patients available to support traditional research methods is often inadequate. However, patients who have similar diseases cluster “virtually” online via social media. This study aimed to (1) determine whether patients who have the rare diseases Fontan-associated protein losing enteropathy (PLE) and plastic bronchitis (PB) would participate in online research, and (2) explore response patterns to examine social media’s role in participation compared with other referral modalities. A novel, internet-based survey querying details of potential pathogenesis, course, and treatment of PLE and PB was created. The study was available online via web and Facebook portals for 1 year. Apart from 2 study-initiated posts on patient-run Facebook pages at the study initiation, all recruitment was driven by study respondents only. Response patterns and referral sources were tracked. A total of 671 respondents with a Fontan palliation completed a valid survey, including 76 who had PLE and 46 who had PB. Responses over time demonstrated periodic, marked increases as new online populations of Fontan patients were reached. Of the responses, 574 (86%) were from the United States and 97 (14%) were international. The leading referral sources were Facebook, internet forums, and traditional websites. Overall, social media outlets referred 84% of all responses, making it the dominant modality for recruiting the largest reported contemporary cohort of Fontan patients and patients who have PLE and PB. The methodology and response patterns from this study can be used to design research applications for other rare diseases. |
Databáze: | OpenAIRE |
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