دورية أكاديمية
Using crowdsourcing to understand patients attitudes toward a clinical trial for retinitis pigmentosa requiring 4 years of participation.
| العنوان: | Using crowdsourcing to understand patients attitudes toward a clinical trial for retinitis pigmentosa requiring 4 years of participation. |
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| المؤلفون: | Kong X; Wilmer Eye Institute, School of Medicine, Johns Hopkins University, Baltimore, Maryland, USA.; Department of Biostatistics, Bloomberg School of Public Health, Johns Hopkins University, Baltimore, Maryland, USA.; Department of Epidemiology, Bloomberg School of Public Health, Johns Hopkins University, Baltimore, Maryland, USA.; Department of Health Behavior and Society, Bloomberg School of Public Health, Johns Hopkins University, Baltimore, Maryland, USA., Dorfman C; Emory University, Atlanta, Georgia, USA., Trotochaud S; USHER 2020 Foundation., Naufal F; Wilmer Eye Institute, School of Medicine, Johns Hopkins University, Baltimore, Maryland, USA., Latkin CA; Department of Health Behavior and Society, Bloomberg School of Public Health, Johns Hopkins University, Baltimore, Maryland, USA., Campochiaro PA; Wilmer Eye Institute, School of Medicine, Johns Hopkins University, Baltimore, Maryland, USA.; Department of Neuroscience, School of Medicine, Johns Hopkins University, Baltimore, Maryland, USA. |
| المصدر: | Ophthalmic genetics [Ophthalmic Genet] 2022 Feb; Vol. 43 (1), pp. 36-41. Date of Electronic Publication: 2021 Aug 11. |
| نوع المنشور: | Journal Article; Research Support, N.I.H., Extramural; Research Support, Non-U.S. Gov't |
| اللغة: | English |
| بيانات الدورية: | Publisher: Informa Healthcare Country of Publication: England NLM ID: 9436057 Publication Model: Print-Electronic Cited Medium: Internet ISSN: 1744-5094 (Electronic) Linking ISSN: 13816810 NLM ISO Abbreviation: Ophthalmic Genet Subsets: MEDLINE |
| أسماء مطبوعة: | Publication: London : Informa Healthcare Original Publication: Buren, The Netherlands : Aeolus Press, c1994- |
| مواضيع طبية MeSH: | Cell Phone* , Crowdsourcing* , Retinitis Pigmentosa*/drug therapy , Text Messaging*, Adult ; Attitude ; Child, Preschool ; Female ; Humans ; Infant ; Male ; Middle Aged |
| مستخلص: | Background: Clinical trials for retinitis pigmentosa (RP) likely require long follow-ups because of the slow progression of RP. Understanding patients' attitudes toward participation in a long trial and their acceptability of strategies aimed at promoting retention/compliance is important for assessing feasibility and resource needs and optimizing trial design. Methods: A crowdsourcing survey to adult RP patients was administered on social media in 2020 July-November. Patient enthusiasm level of study participation, acceptability of attending clinic visits every 4-5 months for 45-months, tele-visits with doctors, and of receiving text messages for medication reminders and for reporting missed dosages were surveyed. Results: Among the 1473 respondents, over 95% use email or a mobile phone and receive text messages; 1157 (79%) respondents were very/somewhat enthusiastic about participation, among them, 80.6% were "very willing" to attend clinic visits every 4-5 months for 45 months; 90.3% were "very willing" to have tele-visits; 64.7% and 77.1% were willing to receive text reminders to take medication and messages surveying missed doses, respectively. The youngest age group (18-30) (22.1%) and oldest age group (70+) (26.1%) compared to the 41-50 years age group (14%) and women (23.5%) compared to men (14.2%) were statistically significantly more likely not to report high willingness to participate in clinical visits for 45 months. Conclusions: A trial requiring 4-years of commitment is feasible although retention can be challenging. Strategies including supplementing in-clinic visits with tele-visits and frequent communications may facilitate retention. This study also demonstrates a methodology useful for planning clinical trials for chronic diseases. |
| معلومات مُعتمدة: | R34 EY031429 United States EY NEI NIH HHS |
| فهرسة مساهمة: | Keywords: Inherited retinal degeneration; multi-center clinical trial planning; patient compliance; patients’ willingness for clinical trial participation |
| تواريخ الأحداث: | Date Created: 20210812 Date Completed: 20220414 Latest Revision: 20230202 |
| رمز التحديث: | 20231215 |
| مُعرف محوري في PubMed: | PMC8831654 |
| DOI: | 10.1080/13816810.2021.1961282 |
| PMID: | 34380366 |
| قاعدة البيانات: | MEDLINE |
PDF full text from Publisher | تدمد: | 1744-5094 |
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| DOI: | 10.1080/13816810.2021.1961282 |