title: Three parties, one direction: Research priorities in adults with congenital heart disease. What do professionals, patients and relatives want to know?
abstract: BACKGROUND
  Patients, their relatives, as well as medical specialists from the fields of paediatric cardiology, cardiology and cardiac surgery were surveyed to investigate the current research needs in the field of congenital heart disease (CHD) focussing specifically on the needs of those affected.
  
  
  METHODS
  An online survey including four groups of patients with CHD (Fontan circulation, transposition of the great arteries [TGA] after atrial switch [AS] and after arterial switch operation [ASO], tetralogy of Fallot [TOF]) was performed. Each questionnaire comprised twelve topics. Persons affected (patients and relatives) were surveyed by means of CHD group specific questionnaires. Participants were recruited through the German National Register for Congenital Heart Defects.
  
  
  RESULTS
  N=596 affected persons (Fontan circulation: n=189; TGA after AS: n=64; TGA after ASO: n=90; TOF: n=253) and 75 physicians (57.3% paediatric cardiologists, 28.0% cardiologists, 10.7% cardiac surgeons, 4.0% other) participated. In general, those affected assume a greater need for research than physicians. Regarding the CHD related topics to be the focus of future research, those affected largely agreed with the participating physicians, although with a different ranking of research topics.
  
  
  CONCLUSIONS
  Based on the results of our study the challenges immanent in routine care for the CHD patient groups investigated can be identified. Accordingly, these topics should be prioritized in the research of the coming years.
authors.affiliation: National Register for Congenital Heart Defects, Berlin, Germany.
authors.forename: Paul C
authors.initials: PC
authors.lastname: Helm
authors.affiliation: National Register for Congenital Heart Defects, Berlin, Germany.
authors.forename: Marc-André
authors.initials: MA
authors.lastname: Körten
authors.affiliation: Saarland University Medical Center, Department of Paediatric Cardiology, Homburg, Germany; Competence Network for Congenital Heart Defects, Berlin, Germany.
authors.forename: Hashim
authors.initials: H
authors.lastname: Abdul-Khaliq
authors.affiliation: National Register for Congenital Heart Defects, Berlin, Germany; Asklepios Klinik Sankt Augustin GmbH, German pediatric heart center, Sankt Augustin, Germany.
authors.forename: Boulos
authors.initials: B
authors.lastname: Asfour
authors.affiliation: National Register for Congenital Heart Defects, Berlin, Germany; University Hospital Muenster, Center for Adults with Congenital Heart Defects (EMAH-Center), Muenster, Germany.
authors.forename: Helmut
authors.initials: H
authors.lastname: Baumgartner
authors.affiliation: University Hospital Muenster, Center for Adults with Congenital Heart Defects (EMAH-Center), Muenster, Germany; Competence Network for Congenital Heart Defects, Berlin, Germany.
authors.forename: Günter
authors.initials: G
authors.lastname: Breithardt
authors.affiliation: National Register for Congenital Heart Defects, Berlin, Germany; Heart and Diabetes Center North Rhine-Westphalia, Center for Congenital Heart Defects, Bad Oeynhausen, Germany.
authors.forename: Deniz
authors.initials: D
authors.lastname: Kececioglu
authors.affiliation: University Department of Thoracic and Cardiovascular Surgery, Tübingen, Germany; Competence Network for Congenital Heart Defects, Berlin, Germany.
authors.forename: Christian
authors.initials: C
authors.lastname: Schlensak
authors.affiliation: National Register for Congenital Heart Defects, Berlin, Germany; University Hospital Muenster, Center for Adults with Congenital Heart Defects (EMAH-Center), Muenster, Germany.
authors.forename: Gerhard-Paul
authors.initials: GP
authors.lastname: Diller
authors.affiliation: National Register for Congenital Heart Defects, Berlin, Germany; Competence Network for Congenital Heart Defects, Berlin, Germany. Electronic address: ubauer@kompetenznetz-ahf.de.
authors.forename: Ulrike M M
authors.initials: UM
authors.lastname: Bauer
mesh_terms: D000293:Adolescent; D000328:Adult; D002309:Cardiology / Q000379:methods*; D005190:Family; D006330:Heart Defects, Congenital / Q000175:diagnosis / Q000453:epidemiology / Q000628:therapy*; D006801:Humans; D008875:Middle Aged; D010358:Patient Participation / Q000379:methods*; D010820:Physicians; D012042:Registries; D012106:Research; D011795:Surveys and Questionnaires; D055815:Young Adult
keywords: Congenital heart disease; Online survey; Patients; Physician; Questionnaire; Research priorities