title: Adherence to guidelines in the clinical care for adults with congenital heart disease: the Euro Heart Survey on adult congenital heart disease.
abstract: OBJECTIVE
  To investigate the role of guidelines in structuring the clinical care for adult patients with congenital heart disease (CHD), and to assess adherence to the guidelines in Europe.
  
  
  RESULTS
  A selected number of current guidelines were chosen pertaining to operative procedures, investigations, and the use of medication ('interventions'). The source for this analysis was the database of the Euro Heart Survey on adult CHD, which contains retrospectively collected data on 4110 patients followed-up for a median of 5.1 years. For each guideline investigated, patients were selected from the database for whom the particular guideline was relevant. The selected cases were classified according to two criteria: was there an indication for the particular intervention and did the intervention take place? In this manner, cases of 'undue treatment' and 'insufficient treatment' were identified. Adherence to guidelines was found to be good in the case of operative procedures and prophylactic drug treatment. However, regarding diagnostic procedures there had been adherence to guidelines in only slightly more than half of the cases.
  
  
  CONCLUSIONS
  Guidelines have an important role in the actual clinical care of adults with CHD. However, large outcome studies are needed to develop more precise guidelines.
authors.affiliation: Department of Cardiology, Room B2-240, Academic Medical Centre, Meibergdreef 9, 1105 AZ Amsterdam, The Netherlands.
authors.forename: Peter
authors.initials: P
authors.lastname: Engelfriet
authors.forename: Jan
authors.initials: J
authors.lastname: Tijssen
authors.forename: Harald
authors.initials: H
authors.lastname: Kaemmerer
authors.forename: Michael A
authors.initials: MA
authors.lastname: Gatzoulis
authors.forename: Eric
authors.initials: E
authors.lastname: Boersma
authors.forename: Erwin
authors.initials: E
authors.lastname: Oechslin
authors.forename: Erik
authors.initials: E
authors.lastname: Thaulow
authors.forename: Jana
authors.initials: J
authors.lastname: Popelová
authors.forename: Philip
authors.initials: P
authors.lastname: Moons
authors.forename: Folkert
authors.initials: F
authors.lastname: Meijboom
authors.forename: Luciano
authors.initials: L
authors.lastname: Daliento
authors.forename: Rafael
authors.initials: R
authors.lastname: Hirsch
authors.forename: Valérie
authors.initials: V
authors.lastname: Laforest
authors.forename: Ulf
authors.initials: U
authors.lastname: Thilén
authors.forename: Barbara
authors.initials: B
authors.lastname: Mulder
mesh_terms: D000293:Adolescent; D000328:Adult; D005060:Europe; D019983:Guideline Adherence; D019538:Health Care Surveys; D006330:Heart Defects, Congenital / Q000628:therapy*; D006801:Humans; D008875:Middle Aged; D017410:Practice Guidelines as Topic / Q000592:standards; D012189:Retrospective Studies