P717Adults with congenital heart disease: lack of specific disease related medical health care from the patients point of view

Neidenbach, Rhoia; Pieper, Lars; Freilinger, Sebastian; Nebel, Kathrin; Sanftenberg, Linda; Schelling, Jörg; Nagdyman, Nicole; Ewert, Peter; Kaemmerer, Harald; Vemah,

doi:10.1093/eurheartj/ehy564.p717

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“…In the meantime, similar to Canada, as of 03/2020 Germany has a nationwide network of more than 348 certified pediatric cardiologists and cardiologists in private practice, 11 certified regional centers and 19 certified supra-regional, tertiary care centers for ACHD. However, as reflected by preliminary data of the VEmaH-study, the problem is that most patients with CHD in Germany do not reach these centers at all (28)(29)(30). This fact is consistent with the patients' statements, that about 50% of the surveyed patients indicated that they have never been referred to a CHD specialist for cardiac problems related to their CHD.…”

Section: The Care Of Patients With Aortopathy In Patients With Chdsupporting

confidence: 55%

Provision of medical health care for adults with congenital heart disease associated with aortic involvement

Kaemmerer¹,

Freilinger²,

Andonian³

et al. 2021

Cardiovasc Diagn Ther

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Background: All patients with congenital heart disease (CHD) are chronically ill from their cardiac disease. Despite the increasing evidence that aortic alterations are becoming relevant, the importance of aortopathy in CHD has long been underestimated. This study was conducted to determine the health status of patients and/or the provision of health services of adults with CHD (ACHD) with manifest aortopathy or at risk thereof.Methods: In a questionnaire-based cross-sectional survey, the "real life"-care of ACHD was analysed, comparing patients with risk of developing aortopathy and/or manifest aortopathy.Results: Of the 563 enrolled ACHD (49.6% female, mean age 35.8±12.1, 18-86 years) 56.8% (n=320) had a risk of developing aortopathy and/or manifest aortopathy. Of the 320 patients at risk, 187 (33.2% of the total number) had a proven aortopathy. Within this subgroup, the basic medical care for CHD-independent medical problems was given by primary medical care providers [family doctors/general practitioners (GP) in 89.4% (n=286), internists in 13.4% (n=43), physicians of another specialty in 2.5% (n=8)]. Almost all primary medical care providers knew about the CHD of their patients. Even for CHD-specific health problems, the basic medical care of risk patients was provided by a family doctor or GP in 56.6% (n=181) and by an internist in 18.4% (n=59). 30.0% (n=96) primarily consulted another specialist, including cardiologists. Only 32.8% of ACHD at risk had ever been referred to a CHD specialist by a GP for cardiac problems related to their CHD. In contrast, the need for advice was high for ACHD with aortopathy and related mainly to physical activity, employment and education, pregnancy, rehabilitation or health and life insurance. Only 35.5% of patients at risk indicated that their information on specific care structures for ACHD was sufficient, and a further 38.1% of patients were aware of patient organizations.Conclusions: Even today, aortic involvement in ACHD is an often-overlooked condition, although considerable negative effects on morbidity and mortality exist. As aortopathy gains in importance with increasing age and complexity of CHD, almost all affected ACHD need lifelong medical advice and access to modern, scientifically based care concepts. According to the study-results, primary care providers and also patients are mostly insufficiently informed about the specialized ACHD facilities. The future goal is therefore to create a better awareness of CHD problems among both primary care physicians and the patients concerned.

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Section: The Care Of Patients With Aortopathy In Patients With Chdsupporting

confidence: 55%

Provision of medical health care for adults with congenital heart disease associated with aortic involvement

Kaemmerer¹,

Freilinger²,

Andonian³

et al. 2021

Cardiovasc Diagn Ther

View full text Add to dashboard Cite

show abstract

P717Adults with congenital heart disease: lack of specific disease related medical health care from the patients point of view

Cited by 1 publication

References 0 publications

Provision of medical health care for adults with congenital heart disease associated with aortic involvement

Provision of medical health care for adults with congenital heart disease associated with aortic involvement

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