Development of an Online, Evidence-Based Patient Information Portal for Congenital Heart Disease: A Pilot Study
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 aor...
| Main Authors: | , , , , , , , , |
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| Format: | Article |
| Language: | English |
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Frontiers Media S.A.
2017-05-01
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| Series: | Frontiers in Cardiovascular Medicine |
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| Online Access: | http://journal.frontiersin.org/article/10.3389/fcvm.2017.00025/full |
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| author | Jonathan R. G. Etnel Arie P. J. van Dijk Jolanda Kluin Jolanda Kluin Robin A. Bertels Elisabeth M. W. J. Utens Elisabeth M. W. J. Utens Elisabeth M. W. J. Utens Eugene van Galen Regina The Ad J. J. C. Bogers Johanna J. M. Takkenberg |
| author_facet | Jonathan R. G. Etnel Arie P. J. van Dijk Jolanda Kluin Jolanda Kluin Robin A. Bertels Elisabeth M. W. J. Utens Elisabeth M. W. J. Utens Elisabeth M. W. J. Utens Eugene van Galen Regina The Ad J. J. C. Bogers Johanna J. M. Takkenberg |
| author_sort | Jonathan R. G. Etnel |
| collection | DOAJ |
| description | 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. |
| first_indexed | 2024-12-22T02:17:57Z |
| format | Article |
| id | doaj.art-70c3f50777244629a505753082096852 |
| institution | Directory Open Access Journal |
| issn | 2297-055X |
| language | English |
| last_indexed | 2024-12-22T02:17:57Z |
| publishDate | 2017-05-01 |
| publisher | Frontiers Media S.A. |
| record_format | Article |
| series | Frontiers in Cardiovascular Medicine |
| spelling | doaj.art-70c3f50777244629a5057530820968522022-12-21T18:42:14ZengFrontiers Media S.A.Frontiers in Cardiovascular Medicine2297-055X2017-05-01410.3389/fcvm.2017.00025250295Development of an Online, Evidence-Based Patient Information Portal for Congenital Heart Disease: A Pilot StudyJonathan R. G. Etnel0Arie P. J. van Dijk1Jolanda Kluin2Jolanda Kluin3Robin A. Bertels4Elisabeth M. W. J. Utens5Elisabeth M. W. J. Utens6Elisabeth M. W. J. Utens7Eugene van Galen8Regina The9Ad J. J. C. Bogers10Johanna J. M. Takkenberg11Department of Cardiothoracic Surgery, Erasmus University Medical Center, Rotterdam, NetherlandsDepartment of Cardiology, Radboud University Medical Center, Nijmegen, NetherlandsDepartment of Cardiothoracic Surgery, Academic Medical Center, Amsterdam, NetherlandsDepartment of Cardiothoracic Surgery, Leiden University Medical Center, Leiden, NetherlandsDepartment of Pediatric Cardiology, Leiden University Medical Center, Leiden, NetherlandsDepartment of Child and Adolescent Psychiatry/Psychology, Erasmus University Medical Center – Sophia Children’s Hospital, Rotterdam, NetherlandsResearch Institute of Child Development and Education, University of Amsterdam, Amsterdam, NetherlandsDe Bascule, Academic Center for Child Psychiatry, Amsterdam, NetherlandsPatient Association ‘Patiëntenvereniging Aangeboren Hartafwijkingen’, Maarssen, Netherlands0ZorgKeuzeLab, Delft, NetherlandsDepartment of Cardiothoracic Surgery, Erasmus University Medical Center, Rotterdam, NetherlandsDepartment of Cardiothoracic Surgery, Erasmus University Medical Center, Rotterdam, NetherlandsObjectivesIn 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.http://journal.frontiersin.org/article/10.3389/fcvm.2017.00025/fullpatient informationshared decision-makingcongenital heart diseasepatient education toolspatient information portalmultidisciplinary approach |
| spellingShingle | Jonathan R. G. Etnel Arie P. J. van Dijk Jolanda Kluin Jolanda Kluin Robin A. Bertels Elisabeth M. W. J. Utens Elisabeth M. W. J. Utens Elisabeth M. W. J. Utens Eugene van Galen Regina The Ad J. J. C. Bogers Johanna J. M. Takkenberg Development of an Online, Evidence-Based Patient Information Portal for Congenital Heart Disease: A Pilot Study Frontiers in Cardiovascular Medicine patient information shared decision-making congenital heart disease patient education tools patient information portal multidisciplinary approach |
| title | Development of an Online, Evidence-Based Patient Information Portal for Congenital Heart Disease: A Pilot Study |
| title_full | Development of an Online, Evidence-Based Patient Information Portal for Congenital Heart Disease: A Pilot Study |
| title_fullStr | Development of an Online, Evidence-Based Patient Information Portal for Congenital Heart Disease: A Pilot Study |
| title_full_unstemmed | Development of an Online, Evidence-Based Patient Information Portal for Congenital Heart Disease: A Pilot Study |
| title_short | Development of an Online, Evidence-Based Patient Information Portal for Congenital Heart Disease: A Pilot Study |
| title_sort | development of an online evidence based patient information portal for congenital heart disease a pilot study |
| topic | patient information shared decision-making congenital heart disease patient education tools patient information portal multidisciplinary approach |
| url | http://journal.frontiersin.org/article/10.3389/fcvm.2017.00025/full |
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