{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,8]],"date-time":"2026-10-08T06:06:07Z","timestamp":1791439567198,"version":"4.3.3"},"reference-count":28,"publisher":"Frontiers Media SA","funder":[{"DOI":"10.13039\/501100002996","name":"Hartstichting","doi-asserted-by":"publisher","award":["2013T093"],"award-info":[{"award-number":["2013T093"]}],"id":[{"id":"10.13039\/501100002996","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["frontiersin.org"],"crossmark-restriction":true},"short-container-title":["Front. Cardiovasc. Med."],"DOI":"10.3389\/fcvm.2017.00025","type":"journal-article","created":{"date-parts":[[2017,5,1]],"date-time":"2017-05-01T10:28:24Z","timestamp":1493634504000},"update-policy":"https:\/\/doi.org\/10.3389\/crossmark-policy","source":"Crossref","is-referenced-by-count":17,"title":["Development of an Online, Evidence-Based Patient Information Portal for Congenital Heart Disease: A Pilot Study"],"prefix":"10.3389","volume":"4","author":[{"given":"Jonathan R. G.","family":"Etnel","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Arie P. J.","family":"van Dijk","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jolanda","family":"Kluin","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Robin A.","family":"Bertels","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Elisabeth M. W. J.","family":"Utens","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Eugene","family":"van Galen","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ad J. J. C.","family":"Bogers","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Johanna J. M.","family":"Takkenberg","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"1965","published-online":{"date-parts":[[2017,5,1]]},"reference":[{"key":"B1","doi-asserted-by":"publisher","first-page":"2241","DOI":"10.1016\/j.jacc.2011.08.025","article-title":"Birth prevalence of congenital heart disease worldwide: a systematic review and meta-analysis","volume":"58","author":"van der Linde","year":"2011","journal-title":"J Am Coll Cardiol"},{"key":"B2","doi-asserted-by":"publisher","first-page":"141","DOI":"10.5830\/CVJA-2013-028","article-title":"The global burden of congenital heart disease","volume":"24","author":"Hoffman","year":"2013","journal-title":"Cardiovasc J Afr"},{"key":"B3","doi-asserted-by":"publisher","first-page":"1170","DOI":"10.1016\/S0735-1097(01)01272-4","article-title":"Task force 1: the changing profile of congenital heart disease in adult life","volume":"37","author":"Warnes","year":"2001","journal-title":"J Am Coll Cardiol"},{"key":"B4","first-page":"141","article-title":"Transition of care to adult congenital heart centres: what do patients know about their heart condition?","volume":"18","author":"Dore","year":"2002","journal-title":"Can J Cardiol"},{"key":"B5","doi-asserted-by":"publisher","first-page":"44","DOI":"10.1111\/j.1747-0803.2007.00071.x","article-title":"Biomedical and psychosocial evaluation of \u201ccured\u201d adults with congenital heart disease","volume":"2","author":"Saidi","year":"2007","journal-title":"Congenit Heart Dis"},{"key":"B6","doi-asserted-by":"publisher","first-page":"16","DOI":"10.1111\/j.1747-0803.2007.00161.x","article-title":"Health behaviors among adolescents and young adults with congenital heart disease","volume":"3","author":"Reid","year":"2008","journal-title":"Congenit Heart Dis"},{"key":"B7","doi-asserted-by":"publisher","first-page":"31","DOI":"10.4065\/75.1.31","article-title":"Psychosocial profile of adults with complex congenital heart disease","volume":"75","author":"Horner","year":"2000","journal-title":"Mayo Clin Proc"},{"key":"B8","doi-asserted-by":"publisher","first-page":"2","DOI":"10.1038\/ncpcardio0382","article-title":"Adult congenital heart disease: education, education, education","volume":"3","author":"Gatzoulis","year":"2006","journal-title":"Nat Clin Pract Cardiovasc Med"},{"key":"B9","volume-title":"Quality of Life in Adults with Congenital Heart Disease: Beyond the Quantity of Life","author":"Moons","year":"2004"},{"key":"B10","doi-asserted-by":"publisher","first-page":"21","DOI":"10.1097\/00004479-200701000-00005","article-title":"Is patient activation associated with outcomes of care for adults with chronic conditions?","volume":"30","author":"Mosen","year":"2007","journal-title":"J Ambul Care Manage"},{"key":"B11","doi-asserted-by":"publisher","first-page":"520","DOI":"10.1007\/s11606-011-1931-2","article-title":"Why does patient activation matter? An examination of the relationships between patient activation and health-related outcomes","volume":"27","author":"Greene","year":"2012","journal-title":"J Gen Intern Med"},{"key":"B12","doi-asserted-by":"publisher","first-page":"231","DOI":"10.1177\/1474515114565214","article-title":"Exploring the relationship between disease-related knowledge and health risk behaviours in young people with congenital heart disease","volume":"15","author":"Janssens","year":"2016","journal-title":"Eur J Cardiovasc Nurs"},{"key":"B13","doi-asserted-by":"publisher","first-page":"1370","DOI":"10.1016\/j.jpeds.2015.02.041","article-title":"Effectiveness of structured education on knowledge and health behaviors in patients with congenital heart disease","volume":"166","author":"Goossens","year":"2015","journal-title":"J Pediatr"},{"key":"B14","doi-asserted-by":"publisher","first-page":"139","DOI":"10.1016\/j.hrtlng.2009.11.005","article-title":"Patient knowledge of and adherence to oral anticoagulation therapy after mechanical heart-valve replacement for congenital or acquired valve defects","volume":"40","author":"Van Damme","year":"2011","journal-title":"Heart Lung"},{"key":"B15","doi-asserted-by":"publisher","first-page":"243","DOI":"10.1017\/S1047951116000391","article-title":"Psychosocial needs of children undergoing an invasive procedure for a CHD and their parents","volume":"27","author":"Levert","year":"2017","journal-title":"Cardiol Young"},{"key":"B16","doi-asserted-by":"publisher","first-page":"216","DOI":"10.1377\/hlthaff.2012.1064","article-title":"Patients with lower activation associated with higher costs; delivery systems should know their patients\u2019 \u2018scores\u2019","volume":"32","author":"Hibbard","year":"2013","journal-title":"Health Aff (Millwood)"},{"key":"B17","doi-asserted-by":"publisher","first-page":"74","DOI":"10.1136\/heart.86.1.74","article-title":"What do adult patients with congenital heart disease know about their disease, treatment, and prevention of complications? A call for structured patient education","volume":"86","author":"Moons","year":"2001","journal-title":"Heart"},{"key":"B18","doi-asserted-by":"publisher","first-page":"63","DOI":"10.1177\/1474515113479231","article-title":"Effectiveness of structured patient education on the knowledge level of adolescents and adults with congenital heart disease","volume":"13","author":"Goossens","year":"2014","journal-title":"Eur J Cardiovasc Nurs"},{"key":"B19","doi-asserted-by":"publisher","first-page":"541","DOI":"10.1097\/JCN.0b013e318260c308","article-title":"An evaluation of disease knowledge in dyads of parents and their adolescent children with congenital heart disease","volume":"28","author":"Yang","year":"2013","journal-title":"J Cardiovasc Nurs"},{"key":"B20","doi-asserted-by":"publisher","first-page":"77","DOI":"10.1177\/1474515111429662","article-title":"Measuring knowledge of patients with congenital heart disease and their parents: validity of the \u2018Leuven Knowledge Questionnaire for Congenital Heart Disease\u2019","volume":"11","author":"Yang","year":"2012","journal-title":"Eur J Cardiovasc Nurs"},{"key":"B21","doi-asserted-by":"publisher","first-page":"755","DOI":"10.1016\/j.cnur.2004.07.010","article-title":"Educational and behavioral issues in transitioning from pediatric cardiology to adult-centered health care","volume":"39","author":"Van Deyk","year":"2004","journal-title":"Nurs Clin North Am"},{"key":"B22","first-page":"1","article-title":"The Delphi technique: making sense of consensus","volume":"12","author":"Hsu","year":"2007","journal-title":"Pract Assess Res Eval"},{"key":"B23","doi-asserted-by":"publisher","first-page":"S2","DOI":"10.1186\/1472-6947-13-S2-S2","article-title":"A systematic development process for patient decision aids","volume":"13","author":"Coulter","year":"2013","journal-title":"BMC Med Inform Decis Mak"},{"key":"B24","doi-asserted-by":"publisher","first-page":"e000237","DOI":"10.1136\/openhrt-2015-000237","article-title":"Prosthetic aortic valve selection: current patient experience, preferences and knowledge","volume":"2","author":"Korteland","year":"2015","journal-title":"Open Heart"},{"key":"B25","doi-asserted-by":"publisher","first-page":"37","DOI":"10.1177\/0272989X0102100105","article-title":"General performance on a Numeracy Scale among highly educated samples","volume":"21","author":"Lipkus","year":"2001","journal-title":"Med Decis Making"},{"key":"B26","doi-asserted-by":"publisher","first-page":"497","DOI":"10.1097\/JCN.0b013e31820984c9","article-title":"Healthcare needs of adults with congenital heart disease: study of the patient perspective","volume":"26","author":"Harrison","year":"2011","journal-title":"J Cardiovasc Nurs"},{"key":"B27","first-page":"5782","article-title":"The Gambia Hepatitis Intervention Study","volume":"47","year":"1987","journal-title":"Cancer Res"},{"key":"B28","doi-asserted-by":"publisher","first-page":"936","DOI":"10.1016\/j.jclinepi.2010.12.003","article-title":"Systematic review of stepped wedge cluster randomized trials shows that design is particularly used to evaluate interventions during routine implementation","volume":"64","author":"Mdege","year":"2011","journal-title":"J Clin Epidemiol"}],"container-title":["Frontiers in Cardiovascular Medicine"],"original-title":[],"link":[{"URL":"http:\/\/journal.frontiersin.org\/article\/10.3389\/fcvm.2017.00025\/full","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2017,5,8]],"date-time":"2017-05-08T10:24:39Z","timestamp":1494239079000},"score":1,"resource":{"primary":{"URL":"http:\/\/journal.frontiersin.org\/article\/10.3389\/fcvm.2017.00025\/full"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2017,5,1]]},"references-count":28,"alternative-id":["10.3389\/fcvm.2017.00025"],"URL":"https:\/\/doi.org\/10.3389\/fcvm.2017.00025","relation":{},"ISSN":["2297-055X"],"issn-type":[{"value":"2297-055X","type":"electronic"}],"subject":[],"published":{"date-parts":[[2017,5,1]]},"article-number":"25"}}