ORIGINAL ARTICLES The Perspective of Patients with Congenital Heart Disease: Does Health Care Meet Their Needs? Dounya Schoormans, MPhil,* ,†,‡ Mirjam A.G. Sprangers, PhD,* Petronella G. Pieper, MD, PhD, § Joost P. van Melle, MD, PhD, § Arie P.J. van Dijk, MD, PhD, ¶ Gertjan Tj. Sieswerda, MD, PhD,** Mariët S. Hulsbergen-Zwarts, MD, †† Thijs H.W.M. Plokker, MD, PhD, ‡‡ Leo G.H. Brunninkhuis, MD, §§ Hubert W. Vliegen, MD, PhD, ¶¶ and Barbara J.M. Mulder, MD, PhD †,‡ *Department of Medical Psychology, Academic Medical Center, Amsterdam, The Netherlands; † Department of Cardiology, Academic Medical Center, Amsterdam, The Netherlands; ‡ Interuniversity Cardiology Institute of the Netherlands, Utrecht, The Netherlands; § Department of Cardiology, University Medical Center Groningen, Groningen, The Netherlands; ¶ Department of Cardiology, Radboud University Nijmegen Medical Center, Nijmegen, The Netherlands; **Department of Cardiology, University Medical Center Utrecht, Utrecht, The Netherlands; †† Department of Cardiology, TweeSteden Hospital, Tilburg and Waalwijk, The Netherlands; ‡‡ Department of Cardiology, Sint Antonius Hospital, Nieuwegein, The Netherlands; §§ Department of Cardiology, Orbis Medical Center, Sittard, The Netherlands; ¶¶ Leiden University Medical Center, Leiden, The Netherlands 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. Patients. 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). Main Outcome Measures. 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, respec- tively. 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 commu- nication skills of the cardiologist as insufficient have need more contact. In addition to the recommended train- ing 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. Key Words. Congenital Heart Disease; Health Care Use; Health Care Needs Introduction A nnually, eight out of 1000 live births are diag- nosed with a congenital heart defect (CHD). 1 Thanks to the successes of cardiac surgery, almost 85% of CHD patients reach adulthood. 2 Most patients have residual lesions possibly resulting in impaired quality of life. 3 To manage the congenital malformation and to reduce the negative impact on daily life, lifelong care is needed. 219 © 2011 Copyright the Authors Congenital Heart Disease © 2011 Wiley Periodicals, Inc. Congenit Heart Dis. 2011;6:219–227