title: The perspective of patients with congenital heart disease: does health care meet their needs?
abstract: OBJECTIVE
  A first step in the delivery of tailored care is answering the following question: does health care meet the needs of patients? Therefore patients' perspective on health care use and their needs was examined. The design used was cross-sectional questionnaire study.
  
  
  METHODS
  A total of 1109 adult congenital heart defect (CHD) patients attending one of eight Dutch hospitals were randomly selected from a national database (10% of all registered patients).
  
  
  METHODS
  Patient reported questionnaires on in- and outpatient health care use during the past year and need for additional care.
  
  
  RESULTS
  A total of 66% and 40% of patients had contact with their cardiologist and general practitioner, respectively. Six to 10 percent were hospitalized, operated upon, or visited the emergency room. For the majority, the amount of contact was sufficient. Most patients indicated that the communication skills and expertise of the cardiologist and general practitioner were sufficient, and health care improvements were not necessary. Frequent health care users had a poor functional status and frequent contact with their cardiologist and general practitioner. Patients who want more contact with their cardiologist rated the communication skills of the cardiologist as insufficient.
  
  
  CONCLUSIONS
  For most patients, the amount and quality of care are both sufficient. Patients who rate the communication skills of the cardiologist as insufficient have need more contact. In addition to the recommended training program as described in the American College of Cardiology/American Heart Association (ACC/AHA) and European Society of Cardiology (ESC) guidelines, we recommend the incorporation of communication training. This is the first study to provide insight into health care use and needs of CHD patients in countries with a compulsory health insurance system from the patient perspective.
authors.affiliation: Department of Medical Psychology, Academic Medical Center, Amsterdam, The Netherlands.
authors.forename: Dounya
authors.initials: D
authors.lastname: Schoormans
authors.forename: Mirjam A G
authors.initials: MA
authors.lastname: Sprangers
authors.forename: Petronella G
authors.initials: PG
authors.lastname: Pieper
authors.forename: Joost P
authors.initials: JP
authors.lastname: van Melle
authors.forename: Arie P J
authors.initials: AP
authors.lastname: van Dijk
authors.forename: Gertjan Tj
authors.initials: GT
authors.lastname: Sieswerda
authors.forename: Mariët S
authors.initials: MS
authors.lastname: Hulsbergen-Zwarts
authors.forename: Thijs H W M
authors.initials: TH
authors.lastname: Plokker
authors.forename: Leo G H
authors.initials: LG
authors.lastname: Brunninkhuis
authors.forename: Hubert W
authors.initials: HW
authors.lastname: Vliegen
authors.forename: Barbara J M
authors.initials: BJ
authors.lastname: Mulder
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D000553:Ambulatory Care; D000704:Analysis of Variance; D001291:Attitude of Health Personnel; D002309:Cardiology; D016009:Chi-Square Distribution; D003430:Cross-Sectional Studies; D019033:Delivery of Health Care, Integrated / Q000706:statistics & numerical data; D005260:Female; D058006:General Practice; D019538:Health Care Surveys; D007722:Health Knowledge, Attitudes, Practice; D006297:Health Services Accessibility / Q000706:statistics & numerical data; D006330:Heart Defects, Congenital / Q000523:psychology / Q000628:therapy*; D006801:Humans; D007297:Inpatients; D016015:Logistic Models; D008297:Male; D008875:Middle Aged; D020380:Needs Assessment / Q000706:statistics & numerical data; D009426:Netherlands; D016017:Odds Ratio; D017060:Patient Satisfaction / Q000706:statistics & numerical data; D010817:Physician-Patient Relations; D011320:Primary Health Care; D011787:Quality of Health Care / Q000706:statistics & numerical data; D012017:Referral and Consultation; D012042:Registries; D011795:Surveys and Questionnaires; D055815:Young Adult