Toronto Congenital Cardiac Centre for Adults, Peter Munk Cardiac Centre, University Health Network, University of Toronto, Canada.
J Cardiovasc Nurs. 2011 Nov-Dec;26(6):497-503. doi: 10.1097/JCN.0b013e31820984c9.
More than 90% of infants born with congenital heart disease reach adulthood. International medical recommendations outline patient care needs in an effort to optimize patient health. There are, however, limited data focusing on the patient perspective.
This study investigated adult congenital heart disease patient-reported (1) barriers to medical care, (2) healthcare behaviors, and (3) concerns regarding medical, psychosocial, and lifestyle matters.
In this cross-sectional study, a questionnaire was distributed to all patients who attended a patient education conference.
There were 123 adult congenital heart disease participants (58% female; mean age, 37 [SD, 13] years). The most common self-reported cardiac diagnoses were tetralogy of Fallot and transposition of the great arteries. Most patients did not report transportation or financial barriers to care, but did report the following: not wanting further surgery even if it was recommended (18%), not liking to think or talk about one's heart (17%), and not understanding doctors' information; 8% of patients inaccurately considered themselves to be "cured." With regard to healthcare behaviors, more than 80% of patients reported annual family physician and dentist visits, but 34% of patients were unaware when to seek urgent medical attention. Patients reported moderate to extreme concern about the following medical topics: heart rhythm problems (82%), infections (74%), and understanding treatment options (71%). Patients most often reported moderate to extreme concern about the following lifestyle and psychosocial topics: physical activity (77%), insurance (72%), assuming increased health responsibility (73%), diet (71%), mental health (60%), and death and dying (57%).
This study provides important information about 3 specific areas. First, there are potential barriers to care beyond financial and transportation challenges. Second, many patients require education regarding when to seek urgent medical attention. Third, the concerns of this patient population are not limited to medical information. A patient-centered educational program is recommended.
超过 90%的先天性心脏病患儿能够成年。国际医学建议概述了患者的护理需求，以努力优化患者的健康状况。然而，针对患者视角的相关数据十分有限。
本研究调查了成年先天性心脏病患者报告的（1）医疗护理障碍、（2）医疗保健行为以及（3）对医疗、心理社会和生活方式问题的关注。
在这项横断面研究中，向所有参加患者教育会议的患者分发了一份问卷。
共有 123 名成年先天性心脏病患者（58%为女性；平均年龄 37 [标准差 13] 岁）。最常见的自我报告的心脏诊断为法洛四联症和大动脉转位。大多数患者报告称不存在交通或经济方面的就医障碍，但报告了以下情况：即使建议进行手术也不想再进行手术（18%）、不喜欢思考或谈论自己的心脏（17%）以及不理解医生的信息；8%的患者错误地认为自己“痊愈”了。在医疗保健行为方面，超过 80%的患者报告了每年都会看家庭医生和牙医，但 34%的患者不知道何时需要紧急医疗关注。患者报告对以下医疗主题存在中等至极大程度的关注：心律问题（82%）、感染（74%）和理解治疗选择（71%）。患者最常报告对以下生活方式和心理社会主题存在中等至极大程度的关注：体力活动（77%）、保险（72%）、承担更多健康责任（73%）、饮食（71%）、心理健康（60%）和死亡（57%）。
本研究提供了 3 个特定领域的重要信息。首先，除了财务和交通方面的挑战之外，还存在潜在的护理障碍。其次，许多患者需要接受关于何时需要紧急医疗关注的教育。第三，该患者群体的关注点不仅限于医疗信息。建议开展以患者为中心的教育计划。
