Badawy Sherif M, Thompson Alexis A, Liem Robert I
Division of Hematology, Oncology and Stem Cell Transplant, Department of Pediatrics, Ann & Robert H. Lurie Children's Hospital of Chicago, Feinberg School of Medicine at Northwestern University, Chicago, Illinois.
Division of Hematology and Oncology, Department of Pediatrics, Faculty of Medicine at Zagazig University, Zagazig, Egypt.
Pediatr Blood Cancer. 2016 May;63(5):848-52. doi: 10.1002/pbc.25905. Epub 2016 Feb 4.
Hydroxyurea is the only Food and Drug Administration approved medication for sickle cell disease (SCD) with short- and long-term benefits for both morbidity and mortality. However, hydroxyurea underutilization and adherence remain challenges for patients with SCD. The objectives of this study were to determine access to technology among adolescents and young adults (AYA) with SCD and to identify their preferred technology-based strategies for improving medication adherence.
A cross-sectional survey was administered in a variety of clinical settings from October 2014 through May 2015 to AYA (12-22 years) with SCD (all genotypes) followed in a Comprehensive Sickle Cell Program.
Eighty of 107 eligible participants completed the survey for a 75% response rate. Participants (51% female, 94% Black) had a mean age of 15.3 ± 2.8 years. Most participants (75%) were on a daily medication with about half on hydroxyurea. Forgetfulness (67%) was the most common barrier to medication adherence. The majority of participants (85%) owned smartphones and either owned or had access to electronic tablets (83%), laptops (72%), or desktops (70%). Of the proposed smartphone app features, daily medication reminders were ranked first most frequently, followed by education about SCD, adherence text prompts, education about SCD medications, and medication log.
The majority of our AYA with SCD owned smartphones and had access to other electronic devices. Our survey results provided valuable insight into the preferred app features and optimal strategies for developing technology-based interventions, such as a multicomponent app, to increase medication adherence for AYA with SCD or other chronic conditions.
羟基脲是唯一经美国食品药品监督管理局批准用于治疗镰状细胞病（SCD）的药物，对发病率和死亡率均有短期和长期益处。然而，羟基脲的利用不足和依从性问题仍是SCD患者面临的挑战。本研究的目的是确定患有SCD的青少年和青年（AYA）获取技术的情况，并确定他们首选的基于技术的改善药物依从性的策略。
2014年10月至2015年5月，在综合镰状细胞项目中，对患有SCD（所有基因型）的12至22岁AYA在各种临床环境中进行了横断面调查。
107名符合条件的参与者中有80人完成了调查，回复率为75%。参与者（51%为女性，94%为黑人）的平均年龄为15.3±2.8岁。大多数参与者（75%）每天服药，约一半服用羟基脲。遗忘（67%）是药物依从性最常见的障碍。大多数参与者（85%）拥有智能手机，并且拥有或可以使用电子平板电脑（83%）、笔记本电脑（72%）或台式电脑（70%）。在所提议的智能手机应用程序功能中，每日服药提醒最常被列为首选，其次是关于SCD的教育、依从性文本提示、关于SCD药物的教育和服药记录。
我们大多数患有SCD的AYA拥有智能手机，并可以使用其他电子设备。我们的调查结果为开发基于技术的干预措施（如多组件应用程序）以提高患有SCD或其他慢性病的AYA的药物依从性的首选应用程序功能和最佳策略提供了有价值的见解。
