Department of Psychology and Neuroscience, Duke University, Durham, North Carolina.
Department of Pediatrics, Duke University Medical Center, Durham, North Carolina.
Pediatr Blood Cancer. 2018 Aug;65(8):e27081. doi: 10.1002/pbc.27081. Epub 2018 Apr 25.
Adherence to illness self-management among youth with sickle cell disease (SCD) positively impacts health outcomes and decreases overall healthcare costs. Despite this, children with SCD face several barriers to adherence, with adherence rates that remain moderate to low. The current feasibility study examined the Intensive Training Program (ITP), a mobile health (mHealth) intervention for youth with SCD designed to promote disease knowledge, adherence, and patient-provider communication.
Youth with SCD prescribed hydroxyurea between ages 7-18 completed baseline disease knowledge and psychosocial assessments and then were provided with the ITP app. Youth participated in the 90-day ITP, during which they completed three education modules, tracked adherence through daily self-recorded videos on the app, and received video messages from providers. Participants completed poststudy knowledge, psychosocial, and feasibility questionnaires. Medication possession ratio (MPR) was obtained via pharmacy-refill rates.
Thirty-two youths (mean age = 13.0 years) participated, with an average adherence tracking rate of 0.6 (standard deviation = 0.34). All participants demonstrated increased MPR (0.57-0.74, P < 0.001, d = 0.75) and disease knowledge (59.6-88.6%, P < 0.001). There was variable engagement in the ITP; completers demonstrated significantly better SCD-related functioning (P < 0.05), higher parent-reported treatment functioning (P < 0.05), and lower pain impact than noncompleters of the ITP (P < 0.05).
Results support the ITP can feasibly be implemented to promote adherence among youth with SCD. All participants demonstrated increased adherence and disease knowledge. However, there was variable engagement and only intervention completers showed improvements in psychosocial outcomes. Further research is needed to evaluate long-term outcomes and ways to promote engagement in mHealth interventions among the youth.
镰状细胞病 (SCD) 青少年坚持疾病自我管理可积极影响健康结果并降低整体医疗保健成本。尽管如此，患有 SCD 的儿童在坚持治疗方面仍面临多种障碍，坚持治疗的比率仍处于中等至低水平。目前的可行性研究检查了强化培训计划 (ITP)，这是一种针对 SCD 青少年的移动健康 (mHealth) 干预措施，旨在促进疾病知识、坚持治疗和医患沟通。
7-18 岁接受羟基脲治疗的 SCD 青少年完成基线疾病知识和心理社会评估，然后提供 ITP 应用程序。青少年参加了 90 天的 ITP，在此期间他们完成了三个教育模块，通过应用程序上的每日自我记录视频跟踪坚持治疗情况，并收到了来自提供者的视频信息。参与者完成了研究后的知识、心理社会和可行性问卷。通过药房 refill 率获得药物持有率 (MPR)。
32 名青少年（平均年龄 13.0 岁）参与，平均坚持治疗跟踪率为 0.6（标准差 0.34）。所有参与者的 MPR 均增加（0.57-0.74，P<0.001，d=0.75）和疾病知识（59.6-88.6%，P<0.001）。ITP 的参与情况各不相同；完成者的 SCD 相关功能显著更好（P<0.05），父母报告的治疗功能更高（P<0.05），疼痛影响低于 ITP 非完成者（P<0.05）。
结果支持 ITP 可以切实可行地实施，以促进 SCD 青少年的坚持治疗。所有参与者均表现出更高的坚持治疗和疾病知识。然而，参与情况各不相同，只有干预完成者在心理社会结果方面显示出改善。需要进一步研究以评估 mHealth 干预措施对青少年的长期结果和促进参与的方法。
