Leonard Sarah, Anderson Lindsay M, Jonassaint Jude, Jonassaint Charles, Shah Nirmish
*Department of Pediatrics, Duke University Medical Center †Department of Psychology and Neuroscience, Duke University, Durham, NC ‡School of Medicine, University of Pittsburgh, Pittsburgh, PA.
J Pediatr Hematol Oncol. 2017 Apr;39(3):223-229. doi: 10.1097/MPH.0000000000000743.
Iron chelation therapy can prevent iron overload for pediatric patients with sickle cell disease and β-thalassemia major; however, adherence is suboptimal. Therefore, we developed an intensive training program (ITP), to improve medication management and disease knowledge. The objectives were to determine feasibility of the ITP and its preliminary impact on adherence, disease knowledge, and health outcomes. Pediatric patients were recruited to participate in the ITP over a 90-day period and were followed for 6 months. The ITP consisted of 3 components: (1) provider-led education modules; (2) patient recording daily videos of at-home medication administration; and (3) provider feedback through video messages through the ITP app. Eleven patients participated (mean=12.4 y). Initially, patients endorsed high satisfaction and ease of use and tracked their medication usage 81% (24 out of 30) of days. At 90 days, adherence rates remained consistent (80%) and disease knowledge retention was high (96%). At 6 months, participants exhibited a clinically relevant decrease in serum ferritin, which trended toward statistical significance (P=0.068). Medication possession ratio did not significantly increase (0.65 to 0.72; not significant). The mobile ITP was feasibly implemented in a clinical setting; in addition, high levels of compliance, disease knowledge retention, and acceptance encourage larger studies evaluating mobile health technology to improve child health parameters.
铁螯合疗法可以预防镰状细胞病和重型β地中海贫血患儿的铁过载；然而，依从性并不理想。因此，我们制定了一项强化培训计划（ITP），以改善药物管理和疾病知识。目的是确定ITP的可行性及其对依从性、疾病知识和健康结果的初步影响。招募儿科患者在90天内参与ITP，并随访6个月。ITP包括3个组成部分：（1）由医护人员主导的教育模块；（2）患者在家中自行用药时每天录制视频；（3）医护人员通过ITP应用程序发送视频消息提供反馈。11名患者参与（平均年龄=12.4岁）。最初，患者对该计划的满意度很高，且使用方便，81%（30天中的24天）的时间里记录了用药情况。在90天时，依从率保持一致（80%），疾病知识保留率很高（96%）。在6个月时，参与者的血清铁蛋白出现了具有临床意义的下降，有统计学意义的趋势（P=0.068）。药物持有率没有显著增加（从0.65提高到0.72；无显著差异）。移动ITP在临床环境中切实可行；此外，可以高度依从、保留疾病知识和接受该计划，这鼓励开展更大规模的研究来评估移动健康技术对改善儿童健康参数的作用。
