Adolescent and Young Adult Patient Engagement and Participation in Survey-Based Research: A Report From the 'Resilience in Adolescents and Young Adults With Cancer' Study
| Autor: | Miranda C. Bradford, Abby R. Rosenberg, Michele L. Shaffer, K. S. Baker, Joanne Wolfe, Claire Wharton, Kira Bona |
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| Rok vydání: | 2015 |
| Předmět: |
Research design
medicine.medical_specialty business.industry media_common.quotation_subject Health services research Hematology medicine.disease Pediatric cancer 03 medical and health sciences 0302 clinical medicine Oncology 030220 oncology & carcinogenesis Family medicine Pediatrics Perinatology and Child Health medicine Attrition 030212 general & internal medicine Psychological resilience Young adult Patient participation Outcomes research Psychiatry business media_common |
| Zdroj: | Pediatric Blood & Cancer. 63:734-736 |
| ISSN: | 1545-5009 |
| Popis: | Conducting patient-reported outcomes research with adolescents and young adults (AYAs) is difficult due to low participation rates and high attrition. Forty-seven AYAs with newly diagnosed cancer at two large hospitals were prospectively surveyed at the time of diagnosis and 3-6 and 12-18 months later. A subset participated in 1:1 semistructured interviews. Attrition prompted early study closure at one site. The majority of patients preferred paper-pencil to online surveys. Interview participants were more likely to complete surveys (e.g., 93% vs. 58% completion of 3-6 month surveys, P = 0.02). Engaging patients through qualitative methodologies and using patient-preferred instruments may optimize future research success. |
| Databáze: | OpenAIRE |
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