Development of an Online, Evidence-Based Patient Information Portal for Congenital Heart Disease: A Pilot Study

Frontiers in Cardiovascular Medicine
Jonathan R G EtnelJohanna J M Takkenberg

Abstract

In response to an increased need for patient information on congenital heart disease in the Netherlands, we initiated a nationwide initiative to develop an online, evidence-based patient information portal, starting with a pilot project aimed at the subgroup of patients with congenital aortic and pulmonary valve disease. We developed an information portal that aims to (1) improve patient knowledge and involvement and to subsequently reduce anxiety and decisional conflict and improve mental quality of life and (2) to support physicians in informing and communicating with their patients. The information portal was developed according to the systematic International Patient Decision Aid Standards development process employing Delphi techniques by a multidisciplinary workgroup of pediatric and adult congenital cardiologists, a congenital cardiothoracic surgeon, a psychologist, an epidemiologist, a patient representative, and web and industrial design experts. First, patients and physicians were surveyed and interviewed to assess the current state of patient information and explore their preferences and needs to determine the focus for the development of the information portal. We found that patient knowledge and numeracy are limite...Continue Reading

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Citations

Aug 7, 2018·Expert Review of Cardiovascular Therapy·Dirkjan KauwMichiel M Winter
Feb 15, 2019·Circulation. Cardiovascular Quality and Outcomes·Jonathan R G EtnelJohanna J M Takkenberg
Apr 12, 2020·International Journal of Gynecological Cancer : Official Journal of the International Gynecological Cancer Society·Judith E den OudenAnne M van Altena
Dec 19, 2018·Circulation. Cardiovascular Quality and Outcomes·Jonathan R G EtnelJohanna J M Takkenberg
Apr 27, 2018·Intensive Care Medicine·Katherine L BrownBradley S Marino

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