Center for Innovation in Pediatric Practice, Nationwide Children's Hospital Research Institute, The Ohio State University.
Division of Hematology/Oncology/BMT Nationwide Children's Hospital.
J Pediatr Psychol. 2019 Nov 1;44(10):1196-1204. doi: 10.1093/jpepsy/jsz061.
Adolescents with sickle cell disease (SCD) are at increased risk for complications. Hydroxyurea is a medication that can ameliorate risk but to benefit, adolescents must adhere to treatment. Study aims were to describe how adolescents and their caregivers decided who was responsible for treatment tasks, to describe adolescents' and caregivers' responsibility for these tasks, and to examine if hydroxyurea adherence was associated with younger adolescent age, less discrepancy between adolescents' and caregivers' reports of adolescent responsibility, and higher caregiver involvement.
Twenty-nine dyads completed treatment responsibility measures. A combination of laboratory and electronic prescription data were used to determine hydroxyurea adherence and electronic medical records were used to determine appointment adherence.
Few dyads agreed or planned how to complete treatment tasks. Adolescents shared responsibility with caregivers for medication-taking tasks. Adolescents perceived caregivers and caregivers perceived adolescents were overall responsible for treatment, especially for appointment tasks. Half of adolescents were adherent to hydroxyurea and half were adherent to appointments but medication adherence was not associated with age, discrepancy between adolescents' and caregivers' responses, or caregiver involvement.
Despite frequent hydroxyurea and appointment nonadherence, few adolescents and caregivers plan how to manage adolescents' SCD treatment or perceive they are overall responsible. Future studies are needed to determine the factors that influence these perceptions and if increasing adolescent and caregiver treatment planning improves adherence and clinical outcomes.
患有镰状细胞病（SCD）的青少年面临着更高的并发症风险。羟基脲是一种可以降低风险的药物，但为了受益，青少年必须坚持治疗。研究目的是描述青少年及其照顾者如何决定谁负责治疗任务，描述青少年和照顾者对这些任务的责任，并探讨羟基脲的依从性是否与青少年年龄较小、青少年和照顾者对青少年责任的报告差异较小以及照顾者参与度较高有关。
29 对青少年和照顾者完成了治疗责任测量。将实验室和电子处方数据相结合，以确定羟基脲的依从性，并使用电子病历确定预约的依从性。
很少有青少年和照顾者对如何完成治疗任务达成一致或进行计划。青少年与照顾者共同承担药物服用任务的责任。青少年和照顾者普遍认为自己对治疗负有责任，尤其是对预约任务。半数青少年对羟基脲和预约的依从性，但药物的依从性与年龄、青少年和照顾者反应之间的差异或照顾者的参与度无关。
尽管羟基脲和预约的不依从率很高，但很少有青少年和照顾者计划如何管理青少年的 SCD 治疗，或认为他们对治疗负有总体责任。需要进一步研究确定影响这些认知的因素，以及增加青少年和照顾者的治疗计划是否可以提高依从性和临床结果。
