Jones Sophie, Hislop Jodi L, Gilmore Hollie, Greenway Anthea, Hibbard James, Monagle Paul, Newall Fiona
Department of Nursing, The University of Melbourne, Melbourne, Australia.
Haematology Research, Murdoch Children's Research of Institute, Melbourne, Australia.
Res Pract Thromb Haemost. 2023 Feb 3;7(2):100066. doi: 10.1016/j.rpth.2023.100066. eCollection 2023 Feb.
Many children taking warfarin perform their international normalized ratio (INR) at home, with results phoned to a clinician who instructs warfarin dosing. Data suggest that parents can be supported to make warfarin dosing decisions themselves, a process known as patient self-management (PSM).
This study aimed to determine the suitability and acceptability of warfarin PSM in children using the Epic Patient Portal.
Children currently performing INR patient self-testing were eligible. Participation involved an individualized education session, adherence to the PSM program, and participation in phone interviews. Clinical outcomes (INR time in therapeutic range and safety outcomes), patient portal functionality, and family experience were assessed. The hospital human research ethics committee approved the study and consent was obtained from parents/guardians.
Twenty-four families undertook PSM. The median age of children was 11 years and all children had congenital heart disease. A median of 13 INRs was uploaded to the portal per family (range, 8-47) across a 10-month period. Before PSM, the mean time the INR was in therapeutic range was 71%; this increased to 79.9% during PSM (difference: < .001). No adverse events were encountered. Eight families participated in a phone interview. The major theme identified was empowerment; minor themes that emerged included "gaining knowledge," "trust and responsibility builds confidence," "saving time," and "resources as a safety net."
This study demonstrates that communication via the Epic Patient Portal is satisfactory to families and offers a suitable option for PSM for children. Importantly, PSM empowers and builds confidence in families to facilitate management of their child's health.
许多服用华法林的儿童在家中进行国际标准化比值（INR）检测，然后将结果打电话告知指导华法林剂量调整的临床医生。数据表明，可以支持家长自行做出华法林剂量调整决策，这一过程称为患者自我管理（PSM）。
本研究旨在确定使用Epic患者门户进行儿童华法林PSM的适用性和可接受性。
目前正在进行INR自我检测的儿童符合条件。参与包括一次个性化教育课程、坚持PSM计划以及参与电话访谈。评估临床结局（INR处于治疗范围内的时间和安全性结局）、患者门户功能以及家庭体验。医院人体研究伦理委员会批准了该研究，并获得了家长/监护人的同意。
24个家庭进行了PSM。儿童的中位年龄为11岁，所有儿童均患有先天性心脏病。在10个月的时间里，每个家庭上传到门户的INR中位数为13次（范围为8 - 47次）。在PSM之前，INR处于治疗范围内的平均时间为71%；在PSM期间，这一比例增至79.9%（差异：<0.001）。未发生不良事件。8个家庭参与了电话访谈。确定的主要主题是赋权；出现的次要主题包括“获取知识”、“信任和责任建立信心”、“节省时间”以及“资源作为安全保障”。
本研究表明，通过Epic患者门户进行沟通令家庭满意，并为儿童PSM提供了一个合适的选择。重要的是，PSM赋予家庭权力并增强其信心，以促进对孩子健康的管理。
