Neidenbach Rhoia, Achenbach Stephan, Andonian Caroline, Bauer Ulrike M M, Ewert Peter, Freilinger Sebastian, Gundlach Ulrike, Kaemmerer Ann-Sophie, Nagdyman Nicole, Nebel Kathrin, Oberhoffer Renate, Pieper Lars, Reinhard Wibke, Sanftenberg Linda, von Scheidt Fabian, Schelling Jörg, Seidel Lavinia, Weyand Michael, Kaemmerer Harald
Department of Congenital Heart Disease and Pediatric Cardiology, German Heart Center Munich, Technical University Munich, Germany.
Department of Sports Medicine, Exercise Physiology and Prevention, Institute of Sport Science, University of Vienna, Austria.
Cardiovasc Diagn Ther. 2021 Apr;11(2):481-491. doi: 10.21037/cdt-20-825.
The number of adults with congenital heart disease (ACHD) is steadily rising due to increased survival rate and improved medical resources. Accordingly, more than 330,000 ACHD are currently living in Germany. Almost all of them require lifelong specialized medical follow-up for their chronic heart disease, often accompanied by residua, sequelae, or comorbidities. Primary care physicians (PCPs) are a crucial factor in directing patients to ACHD specialists or specialized institutions, but despite all efforts, the number of ACHD under specialized care is low, the lost-to-follow-up rate is high, and the morbidity and mortality is substantial. The present cross-sectional study was designed to systematically characterize the health care of ACHD from a patient perspective, including (I) use of medical care by ACHD, (II) medical counselling needs, and (III) perceived satisfaction with health care.
The German-wide analysis was based on a 25-item questionnaire designed to address different aspects of medical status and health issues of ACHD from their own perspective, performed between May of 2017 and July of 2020.
A total of 4,008 ACHD (52% female; mean age 41.9±17.2 years) completed the questionnaire. The majority of ACHD (3,524, 87.9%) reported, that they consulted their PCP for non-cardiac health problems, and 49.7% (n=1,991) consulted their PCP also for medical problems associated with the underlying CHD. Almost all ACHD reported a need for medical advice concerning exercise capacity and daily life activities, occupational skills, pregnancy, rehabilitation, genetic counselling, insurance, and retirement. A total of 1,840 (45.9%) patients were not aware of the existence of certified ACHD specialists or centers. Moreover, 2,552 (67.6%) of those surveyed were uninformed about patient organizations for ACHD.
The present study demonstrates that ACHD are largely uninformed about the ACHD care structures available nationwide, although the patients have a great need for specialized follow-up, advice, and care.
由于生存率提高和医疗资源改善，患有先天性心脏病的成年人（ACHD）数量正在稳步上升。因此，目前德国有超过33万ACHD患者。几乎所有患者都需要因其慢性心脏病接受终身专业医疗随访，且常伴有残留病变、后遗症或合并症。初级保健医生（PCP）是引导患者前往ACHD专家或专业机构的关键因素，但尽管付出了所有努力，接受专科护理的ACHD患者数量仍然较少，失访率较高，发病率和死亡率也相当可观。本横断面研究旨在从患者角度系统地描述ACHD的医疗保健情况，包括：（I）ACHD患者的医疗保健使用情况；（II）医疗咨询需求；（III）对医疗保健的满意度。
基于一份25项问卷进行全德范围的分析，该问卷旨在从ACHD患者自身角度探讨其医疗状况和健康问题的不同方面，调查于2017年5月至2020年7月进行。
共有4008名ACHD患者（52%为女性；平均年龄41.9±17.2岁）完成了问卷。大多数ACHD患者（3524名，87.9%）报告称，他们因非心脏健康问题咨询过初级保健医生，49.7%（n = 1991）的患者还因潜在的冠心病相关医疗问题咨询过初级保健医生。几乎所有ACHD患者都表示需要就运动能力和日常生活活动、职业技能、怀孕、康复、遗传咨询、保险和退休等方面获得医疗建议。共有1840名（45.9%）患者不知道有认证的ACHD专家或中心。此外，2552名（67.6%）受访者不了解ACHD患者组织。
本研究表明，尽管患者对专科随访、建议和护理有很大需求，但ACHD患者对全国范围内可用的ACHD护理结构大多并不了解。
