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

Abstract

ObjectivesIn 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.Methods and resultsWe 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 limited, reliable information is scarce, physicians inform patients selectively and patient involvement is suboptimal, and there is a need for more reliable, tailored, and multi-faceted information. Based on the findings of these surveys and interviews, a patient-tailored information portal was designed that presents evidence-based disease- and age-specific medical and psychosocial information about diagnosis, treatment, prognosis, and impact on daily life in a manner that is comprehensible and digestible for patients and that meets the needs expressed by both patients and physicians. The effect of the website on patient outcome is currently being assessed in a multicenter stepped-wedge implementation trial.ConclusionThe present pilot project succeeded in developing an online, evidence-based information portal that is supported by both patients and physicians. The information portal will be further developed and expanded to include all other major forms of congenital heart disease, translations into other languages, and a public information portal to serve patients’ relatives and the general public at large.

Clinical and quality of life outcomes after aortic valve replacement and aortic root surgery in adult patients <65 years old

“…Thus, there is an urgent need for innovative solutions to aid in more effectively informing and involving patients. In this light, online patient information portals and decision aids present promising opportunities (31,35). Methods for elucidating patients' values, preferences and treatment goals and how these can effectively be incorporated in decision-making should be explored.…”

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

“…Although the language and contents of our information portal were tailored specifically to the needs of each age group (parents of paediatric patients, teenagers and young adults), the overall design and format of the portal were generally the same. 16 Employing innovative formats such as video/animation, virtual reality, three - dimensional modelling and serious gaming principles may prove more effective in engaging and informing adolescents and young adults and support successful transition from paediatric to adult care.…”

“…The development of this portal has been previously described. 16 Practical introduction of the information portal in the outpatient clinic was tailored to the workflow at each participating department and all participating physicians and support staff were trained in its use. After introduction, subjects in the intervention group were invited to visit the portal by their treating paediatric or adult congenital cardiologist during the outpatient clinic consultation.…”

Patient education interventions for health behaviour change in adults diagnosed with coronary heart disease: A protocol for a systematic review and meta‐analysis

“…Studies will be excluded if: (a) interventions are not structured education; do not focus on behaviour change or self‐management; do not offer different educational content compared with the control (such as in studies primarily comparing different mediums of information delivery); and (b) patients are diagnosed with atrial fibrillation, congenital heart diseases, valve diseases or heart failure, because more specific disease‐related education may be required in comparison to CHD patients (Etnel et al., 2017, 2018; Harding et al., 2008; Thrysoee et al., 2018); (c) and also if CHD patients are not analysed separately from other patients (Crangle et al., 2018; Fitzmaurice & Adams, 2000; Hafsteinsdóttir et al., 2011).…”

“…Studies must specify at least five of the eight items for reporting, which include the provider and recipient, the setting, the mode of delivery, the intensity, the duration, adherence/fidelity to delivery protocols and a detailed description of the intervention content offered for each study group, as recommended by the Workgroup for Intervention Development and Evaluation Research (WIDER Group, 2008); (d) reported outcomes of disease-related knowledge, health behaviours (physical activity, dietary habits, smoking status and medication adherence) for either short-term effects (less than 6 months) and/or long-term effects (6-12 months); and (e) language will be limited to English, simplified Chinese, Spanish and Portuguese as multiple bilingual researchers involved in this study. Studies will be excluded if: (a) interventions are not structured education; do not focus on behaviour change or self-management; do not offer different educational content compared with the control (such as in studies primarily comparing different mediums of information delivery); and (b) patients are diagnosed with atrialfibrillation, congenital heart diseases, valve diseases or heart failure, because more specific disease-related education may be required in comparison to CHD patients(Etnel et al, 2017(Etnel et al, , 2018Harding et al, 2008;Thrysoee et al, 2018); (c) and also if CHD patients are not analysed separately from other patients(Crangle et al, 2018;Fitzmaurice & Adams, 2000;Hafsteinsdóttir et al, 2011).…”