TY - JOUR AU - Taxter, Alysha AU - Johnson, Lisa AU - Tabussi, Doreen AU - Kimura, Yukiko AU - Donaldson, Brittany AU - Lawson, Erica AU - Del Gaizo, Vincent AU - Vitelli, Daniela AU - Pinter, Corinne AU - Van Citters, Aricca AU - Nelson, Eugene AU - Lee, Tzielan PY - 2022 DA - 2022/4/22 TI -支持儿科风湿病联合护理的电子仪表板的共同设计:以人为本的设计和可用性测试JO - J参与医学SP - e34735 VL - 14 IS - 1kw -以人为本的设计KW -合作生产KW -仪表板KW -儿科风湿病KW -青少年特发性关节炎KW - JIA KW -青少年关节炎KW -以患者为中心的KW -患者报告的结果KW -患者沟通KW -患者教育KW -家庭教育AB -背景:共同生产的护理包括患者和家属与他们的临床医生和护理团队合作，前提是每个人都有自己的观点、知识和专业知识，以及他们自己的价值观、目标和偏好。仪表板可以显示有意义的患者和临床数据，以评估患者的情况，并为共享决策提供信息。增加患者和护理团队之间的沟通对于患有慢性疾病的儿童尤为重要。幼年特发性关节炎(JIA)是最常见的慢性小儿风湿病，与疼痛增加、功能下降和生活质量下降有关。目的:本研究的目的是设计一个仪表盘原型，用于JIA患者的联合护理。我们评估了终端用户的使用和需求，就必要的仪表板数据元素达成了共识，并构建了显示原型，以便为合作生产提供有意义的讨论。方法:采用以人为本的设计方法，包括家长、患者、临床医生和护理团队成员，用于开发一个仪表板，以支持4个门诊儿科风湿病诊所的护理联合生产。我们召集了一个由患者、家长、临床医生、护士和工作人员组成的多学科团队(n=18人)，在一次面对面的启动会议上，然后每两周开一次会。 We also leveraged advisory panels. Teams mapped workflows and patient journeys, created personas, and developed dashboard sketches. The final dashboard components were determined via Delphi consensus voting. Low-tech dashboard testing was completed during clinic visits, and visual display prototypes were iterated by using the Plan-Do-Study-Act methodology. Patients and clinicians were surveyed regarding their experiences. Results: Teams achieved consensus on what data mattered most at the point of care to support patients with JIA, families, and clinicians collaborating to make the best possible health care decisions. Notable themes included the right data in the right place at the right time, data in once for multiple purposes, patient and family self-management components, and the opportunity for education and increased transparency. A final set of 11 dashboard data elements was identified, including patient-reported outcomes, clinical data, and medications. Important design considerations featured the incorporation of real-time data, clearly labeled graphs, and vertical orientation to facilitate review and discussion. Prototype paper-testing with 36 patients and families yielded positive feedback, with 89% (8/9) to 100% (9/9) of parents (n=9) and 80% (8/10) to 90% (9/10) of clinicians (n=10) strongly agreeing or agreeing that the dashboard was useful during clinic discussions, helped to talk about what mattered most, and informed health care decision-making. Conclusions: We developed a dashboard prototype that displays patient-reported and clinical data over time, along with medications that can be used during a clinic visit to support meaningful conversations and shared decision-making among patients with JIA, their families, and their clinicians and care teams. SN - 2152-7202 UR - https://jopm.www.mybigtv.com/2022/1/e34735 UR - https://doi.org/10.2196/34735 UR - http://www.ncbi.nlm.nih.gov/pubmed/35133283 DO - 10.2196/34735 ID - info:doi/10.2196/34735 ER -