Irish Centre for Vascular Biology, Royal College of Surgeons in Ireland (RCSI), 123 St Stephen's Green, Dublin, Ireland.
Haematology Department, Children's Health Ireland (CHI) at Crumlin, Dublin, Ireland.
Ir J Med Sci. 2022 Apr;191(2):809-816. doi: 10.1007/s11845-021-02588-1. Epub 2021 Mar 20.
SCD patients experience declines in health-related quality of life (HRQOL) domains compared with healthy controls. Despite evidence supporting the benefits of hydroxyurea, medication non-adherence remains problematic, especially in adolescents and young adults (AYA). Adherence barriers include forgetfulness and lack of knowledge. Recently, increased interest in technology-based strategies to improve medication adherence has emerged. No data currently exists on hydroxyurea adherence, HRQOL or perceptions of technology-based tools in the Irish SCD population.
In order to interrogate these domains among Irish AYA SCD patients we administered an anonymous survey at two tertiary referral centres in Dublin, Ireland, in July 2019.
Sixty-three patients participated; 63% female and 37% male, with a median and mean age of 17 and 19 years, respectively. Average monthly adherence was 76% using a visual analogue scale. Recall barriers were present in 62% while 26% omit hydroxyurea for reasons other than forgetting. Reviewing HRQOL; only 36.5% felt always physically able to engage in recreational activities, while 51% experienced disruption to school/college/work due to pain. Eighty-one percent reported that anxiety about health interferes with their lives and non-adherence correlated with worse HRQOL outcomes. Interest in a smartphone app was expressed by the majority, with daily medication reminders being the most popular feature. Sharing adherence data with doctors and discussion forums were less appealing.
Representing over 10% of the Irish SCD population, our survey provides novel and valuable insights into medication adherence and HRQOL domains. Preferred app features may inform future technology-based interventions to improve medication adherence in SCD and other chronic health conditions.
SCD 患者的健康相关生活质量（HRQOL）领域比健康对照组下降。尽管有证据支持羟基脲的益处，但药物依从性仍然存在问题，尤其是在青少年和年轻人（AYA）中。依从性障碍包括健忘和缺乏知识。最近，人们对基于技术的策略提高药物依从性产生了浓厚的兴趣。目前，在爱尔兰 SCD 人群中，没有关于羟基脲依从性、HRQOL 或对基于技术工具的看法的数据。
为了调查爱尔兰 AYA SCD 患者的这些领域，我们在爱尔兰都柏林的两家三级转诊中心于 2019 年 7 月进行了一项匿名调查。
63 名患者参与了调查；63%为女性，37%为男性，中位数和平均年龄分别为 17 岁和 19 岁。使用视觉模拟量表，平均每月依从率为 76%。62%的患者存在回忆障碍，而 26%的患者漏服羟基脲并非因为遗忘。审查 HRQOL；只有 36.5%的人始终感觉身体能够进行娱乐活动，而 51%的人因疼痛而中断学业/大学/工作。81%的人报告说，对健康的焦虑会干扰他们的生活，不依从与更差的 HRQOL 结果相关。大多数患者对智能手机应用程序感兴趣，其中每日药物提醒是最受欢迎的功能。与医生分享依从性数据和讨论论坛的吸引力较小。
代表了超过 10%的爱尔兰 SCD 人群，我们的调查提供了关于药物依从性和 HRQOL 领域的新颖而有价值的见解。首选的应用程序功能可能为改善 SCD 和其他慢性健康状况的基于技术的干预措施提供信息。
