Background To assess the current state of patient information and decision-making in congenital aortic and pulmonary valve disease, we conducted a survey among patients, parents and physicians. Methods A questionnaire was sent by ground mail to 157 adults and 32 parents of children who previously underwent surgery for congenital aortic or pulmonary valve disease at 0-40 years of age between January 2005 and February 2014 at the Erasmus University Medical Center and to all paediatric and adult congenital cardiologists and congenital cardiac surgeons in the Netherlands (n=88). Results 73 patients/parents (39% response rate, 62 adult patients, 11 parents of paediatric patients) and 35 physicians (40% response rate) responded. Median patient age at the time of surgery was 25.7 years. Basic disease-specific knowledge was adequate in 42% of patients/parents and numeracy was sufficient in 47%. Patients/parents reported that they rely heavily on their physicians for information and often experience difficulty in finding reliable information elsewhere. They lack information on psychosocial aspects of disease (29% of respondents) and risks and benefits of treatment options (26%). They feel less involved in decision-making than they would prefer to be (p=0.014). Decisional conflict at the time of surgery was experienced by 31% of patients/parents. If they had to do it again, 72% of patients/parents would want the same treatment. Quality of life is often impaired due to various valve-related anxieties and lifestyle changes. Physicians reported that they are unable to fully inform and sufficiently involve patients, due to limited patient/parent knowledge and understanding (56%) and limited time during consultations (32%). Patients/parents (98%) and physicians (97%) agree that they should have shared roles in decision-making. Conclusion The substantial shortcomings in our current practice of patient information and decision-making underline the need for innovative solutions, such as careful implementation of patient information tools and shared decision-making in the care path.

Additional Metadata
Keywords cardiac surgery, congenital heart disease, surgery-valve, valvular disease
Persistent URL dx.doi.org/10.1136/openhrt-2018-000872, hdl.handle.net/1765/113038
Journal Open Heart
Citation
Etnel, J.R.G, Helbing, W.A, Roos-Hesselink, J.W, The, R. (Regina), Bogers, A.J.J.C, & Takkenberg, J.J.M. (2018). Patient and physician view on patient information and decision-making in congenital aortic and pulmonary valve surgery. Open Heart, 5(2). doi:10.1136/openhrt-2018-000872