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Patient Survey on Patient Information and Decision-Making in Congenital Aortic and Pulmonary Valve Surgery

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Patient Survey on Patient Information and Decision-Making in Congenital Aortic and Pulmonary Valve Surgery
Jonathan R.G. Etnel1; Willem A. Helbing, MD, PhD2; Jolien W. Roos-Hesselink, MD, PhD3; Ad J.J.C. Bogers, MD, PhD1; Johanna J.M. Takkenberg, MD, PhD1

Department of Cardiothoracic Surgery1, Pediatric Cardiology2 and Cardiology3, Erasmus University Medical Center, Rotterdam, The Netherlands.


Background: To optimize treatment of patients with congenital aortic (AV) and pulmonary valve (PV) disease, informing patients in an objective and understandable manner and involving them in decision-making is increasingly considered to be important. A cross-sectional survey was conducted to assess the current state of patient information and shared decision-making (SDM) in congenital aortic and pulmonary valve surgery.

Methods: A questionnaire was sent to 189 patients who underwent surgery at 0-40 years of age for congenital AV or PV disease between January 2005 and February 2014. For patients currently <18 years of age (n=32), the questionnaire was sent to their parents/caregivers. Survey measures included patient knowledge, numeracy, views on patient information, involvement in decision-making, decisional conflict, valve-specific quality of life and preference for risk presentation.

Results: Seventy-three subjects (38.6%; 43 AV, 30 PV; 63 patients, 10 parents) were included. Mean time from surgery to survey was 6.2 ± 2.9 years. Mean age of the participants was 36.3 ± 8.7 years. Survey results are listed in Table 1 and Figures 1 & 2.

Conclusion: After 6 years of follow-up, present survey found substantial shortcomings in the current practice of patient information and SDM. This underlines the need for innovative solutions such as evidence-based online patient information portals, one of which we are currently developing, validating and implementing for all Dutch patients with congenital heart disease (Figure 3). In all communication with patients, limited numeracy and patient preferences for information presentation and SDM should be taken into account.

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