Patient and physician view on patient information and decision-making in congenital aortic and pulmonary valve surgery

Abstract

BackgroundTo 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.MethodsA 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).Results73 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.ConclusionThe 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.

Clinical and quality of life outcomes after aortic valve replacement and aortic root surgery in adult patients <65 years old

“…Because preferences and treatment goals vary between individual patients and also between patients and their physicians, involvement of patients in the decision-making process is essential. Although both physicians and patients have been found to prefer shared roles in decision-making, physicians still experience substantial difficulty in adequately informing and involving their patients (32)(33)(34). Thus, there is an urgent need for innovative solutions to aid in more effectively informing and involving patients.…”

Representativeness of personality and involvement preferences in a web-based survey on healthcare decision-making

“…Regarding control preference profiles, our sample not only displays a distribution that pretty nicely reflects the (‘bell’) distribution that has been repeatedly reported in the literature [ 36 – 38 ], but also specifically resemble CPS profiles reported in studies on men’s’ preferences for involvement in cancer care decisions. In this regard, it is remarkable that, if comparing to Degner and Sloan’s 27 year old data from the ‘pre-patient-involvement-era’, it appears that control preference figures have generally changed in favor of a more collaborative or active role [ 38 , 39 ]. Still, it must be remembered that most other studies have been conducted in patient samples.…”

Representativeness of Personality and Involvement Preferences in a Web-Based Survey on Healthcare Decision-Making

“…Regarding control preference pro les, our sample not only displays a distribution that pretty nicely re ects the ('bell') distribution that has been repeatedly reported in the literature (33)(34)(35), but also speci cally resemble CPS pro les reported in studies on men's' preferences for involvement in cancer care decisions. In this regard, it is remarkable that, if comparing to Degner and Sloan's 27 year old data from the 'prepatient-involvement-era', it appears that control preference gures have generally changed in favor of a more collaborative or active role (35,36). Still, it must be remembered that most other studies have been conducted in patient samples.…”