Patient information portal for congenital aortic and pulmonary valve disease: a stepped-wedge cluster randomised trial.

Autor:	Etnel JRG; Department of Cardiothoracic Surgery, Erasmus University Medical Center, Rotterdam, The Netherlands j.etnel@erasmusmc.nl., Bons LR; Department of Cardiology, Erasmus University Medical Center, Rotterdam, Netherlands., De Heer F; Department of Cardiothoracic Surgery, Academic Medical Center, Amsterdam, Netherlands., Robbers-Visser D; Department of Cardiology, Academic Medical Center, Amsterdam, Netherlands., Van Beynum IM; Department of Pediatric Cardiology, Erasmus University Medical Center, Rotterdam, Netherlands., Straver B; Department of Pediatric Cardiology, Academic Medical Center, Amsterdam, Netherlands., Jongbloed MR; Department of Cardiology, Leiden University Medical Center, Leiden, Netherlands., Kiès P; Department of Cardiology, Leiden University Medical Center, Leiden, Netherlands., Slieker MG; Department of Pediatric Cardiology, Radboudumc, Nijmegen, Netherlands., Van Dijk APJ; Department of Cardiology, Radboudumc, Nijmegen, Netherlands., Kluin J; Department of Cardiothoracic Surgery, Academic Medical Center, Amsterdam, Netherlands.; Department of Cardiothoracic Surgery, Leiden University Medical Center, Leiden, Netherlands., Bertels RA; Department of Pediatric Cardiology, Leiden University Medical Center, Leiden, Netherlands., Utens EMWJ; Department of Child and Adolescent Psychiatry/Psychology, Erasmus University Medical Center, Rotterdam, Netherlands.; Research Institute of Child Development and Education, University of Amsterdam, Amsterdam, Netherlands.; De Bascule, Academic Center for Child Psychiatry, Amsterdam, Netherlands., The R; ZorgKeuzeLab, Delft, Netherlands., Van Galen E; Patient Association 'Patiëntenvereniging Aangeboren Hartafwijkingen', Maarssen, Netherlands., Mulder BJM; Department of Cardiology, Academic Medical Center, Amsterdam, Netherlands., Blom NA; Department of Pediatric Cardiology, Leiden University Medical Center, Leiden, Netherlands., Hazekamp MG; Department of Cardiothoracic Surgery, Leiden University Medical Center, Leiden, Netherlands., Roos-Hesselink JW; Department of Cardiology, Erasmus University Medical Center, Rotterdam, Netherlands., Helbing WA; Department of Pediatric Cardiology, Erasmus University Medical Center, Rotterdam, Netherlands., Bogers AJJC; Department of Cardiothoracic Surgery, Erasmus University Medical Center, Rotterdam, The Netherlands., Takkenberg JJM; Department of Cardiothoracic Surgery, Erasmus University Medical Center, Rotterdam, The Netherlands.
Jazyk:	angličtina
Zdroj:	Open heart [Open Heart] 2021 Mar; Vol. 8 (1).
DOI:	10.1136/openhrt-2020-001252
Abstrakt:	Background: 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. Methods: 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. Results: 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. Conclusion: 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. Competing Interests: Competing interests: None declared. (© Author(s) (or their employer(s)) 2021. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)
Databáze:	MEDLINE
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