Department of Cardiothoracic Surgery, Erasmus University Medical Center, Rotterdam, The Netherlands.
Department of Pediatric Cardiology, Erasmus University Medical Center, Rotterdam, The Netherlands.
Open Heart. 2018 Nov 10;5(2):e000872. doi: 10.1136/openhrt-2018-000872. eCollection 2018.
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.
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).
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.
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.
为了评估先天性主动脉瓣和肺动脉瓣疾病中患者信息和决策的现状，我们对患者、家长和医生进行了一项调查。
我们通过平邮向 2005 年 1 月至 2014 年 2 月期间在伊拉斯姆斯大学医学中心接受过先天性主动脉瓣或肺动脉瓣疾病手术的 157 名成年人和 32 名儿童家长（年龄 0-40 岁），以及荷兰所有儿科和成人先天性心脏病专家和先天性心脏外科医生（n=88）发送了问卷。
73 名患者/家长（39%的回复率，62 名成年患者，11 名儿科患者家长）和 35 名医生（40%的回复率）做出了回应。手术时患者的中位年龄为 25.7 岁。42%的患者/家长具备基本的疾病特异性知识，47%的患者具备足够的计算能力。患者/家长表示他们严重依赖医生获取信息，并且经常难以在其他地方找到可靠的信息。他们缺乏疾病的心理社会方面的信息（29%的受访者）和治疗方案的风险和获益信息（26%）。他们感觉自己在决策过程中没有得到足够的参与（p=0.014）。31%的患者/家长在手术时感到决策冲突。如果必须再次做出选择，72%的患者/家长希望接受同样的治疗。由于各种与瓣膜相关的焦虑和生活方式的改变，生活质量常常受到影响。医生表示，由于患者/家长的知识和理解有限（56%）以及咨询期间时间有限（32%），他们无法充分告知和充分让患者参与决策。患者/家长（98%）和医生（97%）都认为他们应该在决策过程中扮演共同的角色。
我们在患者信息和决策方面的现行做法存在重大缺陷，这突显了需要创新解决方案，例如仔细实施患者信息工具和在护理路径中共同决策。
