Department of Cardiothoracic Surgery, Erasmus University Medical Center, Rotterdam, The Netherlands
Department of Cardiology, Erasmus University Medical Center, Rotterdam, Netherlands.
Open Heart. 2021 Mar;8(1). doi: 10.1136/openhrt-2020-001252.
In response to an increased need for patient information in congenital heart disease, we previously developed an online, evidence-based information portal for patients with congenital aortic and pulmonary valve disease. To assess its effectiveness, a stepped-wedge cluster randomised trial was conducted.
Adult patients and caregivers of paediatric patients with congenital aortic and/or pulmonary valve disease and/or tetralogy of Fallot who visited the outpatient clinic at any of the four participating centres in the Netherlands between 1 March 2016-1 July 2017 were prospectively included. The intervention (information portal) was introduced in the outpatient clinic according to a stepped-wedge randomised design. One month after outpatient clinic visit, each participant completed a questionnaire on disease-specific knowledge, anxiety, depression, mental quality of life, involvement and opinion/attitude concerning patient information and involvement.
343 participants were included (221 control, 122 intervention). Cardiac diagnosis (p=0.873), educational level (p=0.153) and sex (p=0.603) were comparable between the two groups. All outcomes were comparable between groups in the intention-to-treat analyses. However, only 51.6% of subjects in the intervention group (n=63) reported actually visiting the portal. Among these subjects (as-treated), disease-specific knowledge (p=0.041) and mental health (p=0.039) were significantly better than in control subjects, while other baseline and outcome variables were comparable.
Even after being invited by their cardiologists, only half of the participants actually visited the information portal. Only in those participants that actually visited the portal, knowledge of disease and mental health were significantly better. This underlines the importance of effective implementation of online evidence-based patient information portals in clinical practice.
为了满足先天性心脏病患者对信息的需求，我们之前开发了一个在线的、基于证据的先天性主动脉瓣和肺动脉瓣疾病患者信息门户。为了评估其效果，我们进行了一项递进式群组随机对照试验。
2016 年 3 月 1 日至 2017 年 7 月 1 日期间，在荷兰的四个参与中心的门诊就诊的患有先天性主动脉瓣和/或肺动脉瓣疾病和/或法洛四联症的成年患者及其患儿的照顾者被前瞻性纳入。根据递进式群组随机设计，在门诊引入干预措施（信息门户）。门诊就诊后一个月，每位参与者完成一份关于疾病特定知识、焦虑、抑郁、心理生活质量、参与度以及对患者信息和参与度的意见/态度的问卷。
共纳入 343 名参与者（221 名对照组，122 名干预组）。两组的心脏诊断（p=0.873）、教育水平（p=0.153）和性别（p=0.603）相似。意向治疗分析中，两组的所有结局均相似。然而，干预组（n=63）中只有 51.6%的受试者报告实际访问了该门户。在这些实际访问了门户的受试者中（按处理分析），疾病特定知识（p=0.041）和心理健康（p=0.039）明显优于对照组，而其他基线和结局变量相似。
即使在被心脏病专家邀请后，只有一半的参与者实际访问了信息门户。只有在实际访问该门户的参与者中，疾病知识和心理健康状况才显著改善。这强调了在临床实践中有效实施基于在线证据的患者信息门户的重要性。
