Cronin Robert M, Quaye Nives, Liu Xin, Landes Kristina, Crosby Lori E, Kassim Adetola A, Volanakis Emmanuel J, Schnell Patrick M, DeBaun Michael R
Department of Internal Medicine, The Ohio State University, Columbus, OH.
Division of Biostatistics, The Ohio State University College of Public Health, Columbus, OH.
Blood Adv. 2023 Oct 24;7(20):6184-6190. doi: 10.1182/bloodadvances.2023010676.
Despite the increased number of evidence-based guidelines for sickle cell disease (SCD), dissemination of evidence-based guidelines in lay language for individuals or families with SCD has not been evaluated. We conducted a feasibility randomized controlled trial to determine the acceptability of a mobile health (mHealth) app with patient-facing guidelines to improve the knowledge of individuals with SCD about SCD-specific knowledge and reduce hospitalizations. Primary outcome measures include recruitment, retention, and adherence rates. Adults with SCD were enrolled at 2 sickle cell centers between 2018 and 2022. Participants were randomized to receive either an mHealth app + booklet with patient-facing guidelines or a booklet with the guidelines alone. Participants completed surveys at baseline and a final 6-month visit. Approximately 67 of 74 (91%) agreed to participate and were randomized, with 50 of 67 (75%) completing all the study components. All participants who completed the study in the treatment arm used the app. Our results demonstrated high recruitment, retention, and adherence rate for the first randomized trial for an mHealth app with patient-facing guidelines in adults with SCD. This clinical trial was registered at https://www.clinicaltrials.gov/ as #NCT03629678.
尽管镰状细胞病（SCD）基于证据的指南数量有所增加，但尚未对以通俗易懂的语言向患有SCD的个人或家庭传播基于证据的指南进行评估。我们进行了一项可行性随机对照试验，以确定一款带有面向患者指南的移动健康（mHealth）应用程序的可接受性，该应用程序旨在提高SCD患者对SCD特定知识的了解并减少住院次数。主要结局指标包括招募率、留存率和依从率。2018年至2022年期间，在2个镰状细胞中心招募了成年SCD患者。参与者被随机分为两组，一组接受mHealth应用程序+带有面向患者指南的手册，另一组仅接受带有指南的手册。参与者在基线和最后6个月的随访时完成调查。74名参与者中约有67名（91%）同意参与并被随机分组，67名中有50名（75%）完成了所有研究环节。治疗组中所有完成研究的参与者都使用了该应用程序。我们的结果表明，针对成年SCD患者使用带有面向患者指南的mHealth应用程序的首次随机试验具有较高的招募率、留存率和依从率。该临床试验已在https://www.clinicaltrials.gov/上注册，注册号为#NCT03629678。
