Medizinische Versorgung von Erwachsenen mit angeborenen Herzfehlern

Neidenbach, Rhoia; Achenbach, Stephan; Andonian, Caroline; Beckmann, Jürgen; Biber, Sabina; Dittrich, Sven; Ewert, Peter; Freilinger, Sebastian; Huntgeburth, Michael; Nagdyman, Nicole; Oberhoffer, Renate; Pieper, Lars; Kodolitsch, Yskert Von; Weyand, Michael; Bauer, Ulrike; Kaemmerer, Harald

doi:10.1007/s00059-019-4820-9

Cited by 10 publications

(6 citation statements)

References 60 publications

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“…An estimated 330,000 adults are currently living with CHD in Germany [24]. However, data from 24 accredited ACHD centers indicate that only about 22,000 ACHD are under ACHD-accredited follow-up care [25].…”

Section: Discussionmentioning

confidence: 99%

Facts about the General Medical Care of Adults with Congenital Heart Defects: Experience of a Tertiary Care Center

Seidel

Nebel

Achenbach

et al. 2020

JCM

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Background: Due to the increase in survival rates for congenital heart disease (CHD) in the last decades, over 90% of patients today reach adulthood. Currently, there are more than 300,000 adults with CHD (ACHD) living in Germany. They have an increased need for specialized medical care, since almost all ACHD have chronic heart disease and suffer from specific chronic symptoms, risks, and sequelae. Primary care physicians (PCPs) play a crucial role in referring patients to ACHD specialists or specialized institutions. This cross-sectional study is intended to clarify the real-world care of ACHD from the PCP’s perspective. Methods: This analysis, initiated by the German Heart Centre Munich, was based on a 27-item questionnaire on actual ACHD health care practice in Germany from the PCP’s perspective. Results: In total, 767 questionnaires were considered valid for inclusion. The majority of the PCPs were general practitioners (95.9%), and 84.1% had cared for ACHD during the past year. A majority (69.2%) of the PCPs had cared for patients with simple CHD, while 50.6% and 33.4% had cared for patients with moderate and severe CHD, respectively, in all age groups. PCPs treated almost all typical residual symptoms and sequelae, and advised patients regarding difficult questions, including exercise capacity, pregnancy, genetics, and insurance matters. However, 33.8% of the PCPs did not even know about the existence of certified ACHD specialists or centers. Only 23.9% involved an ACHD-specialized physician in their treatment. In cases of severe cardiac issues, 70.8% of the PCPs referred patients to ACHD-certified centers. Although 52.5% of the PCPs were not sufficiently informed about existing structures, 64.2% rated the current care situation as either “very good” or “good”. Only 26.3% (n = 190) of the responding physicians were aware of patient organizations for ACHD. Conclusions: The present study showed that the majority of PCPs are not informed about the ACHD care structures available in Germany. The need for specialized ACHD follow-up care is largely underestimated, with an urgent need for optimization to reduce morbidity and mortality. For the future, solutions must be developed to integrate PCPs more intensively into the ACHD care network.

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Section: Discussionmentioning

confidence: 99%

Facts about the General Medical Care of Adults with Congenital Heart Defects: Experience of a Tertiary Care Center

Seidel

Nebel

Achenbach

et al. 2020

JCM

View full text Add to dashboard Cite

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“…In addition to their physical limitations that afford a consequent and specialized treatment ( 19 ), ACHD patients are burdened by a huge variety of mental diseases including depression and anxiety disorders as the most common mental illnesses ( 13 – 15 ). Although presumed that in ACHD depression and anxiety symptoms have an impact on attendance, the data from the present study are the first to confirm this assumption.…”

Section: Discussionmentioning

confidence: 99%

“…In particular, ACHD patients with their congenital heart disease associated long-term sequela and their great burden of mental illness, require essential medical care ( 15 , 19 ).…”

Section: Discussionmentioning

confidence: 99%

Impact of COVID-19 on Medical Supply in Adults With Congenital Heart Disease

et al. 2022

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IntroductionIn March 2020, the World Health organization declared COVID-19 a global pandemic. One year later, the direct and indirect burden of the COVID-19 pandemic become more visible. In this context, there is concern about the allocation of medical resources and medical treatment of other diseases than COVID-19. Particularly, patients with chronic diseases need constant medical and pharmacological treatment. Therefore, we evaluated a large cohort of patients with adult congenital heart disease (ACHD) regarding postponed medical appointments and their possibilities to receive medical treatment during the COVID-19 pandemic.MethodsThis cross-sectional study included 559 patients with ACHD (mean age 37.32 ± 11.98; 47% female). Clinical characteristics, answers to questionnaires concerning lifestyle, psychological well-being, addictive behavior and adherence were related to postponed medical appointments and limited access to medical care.ResultsOne hundred and nine patients (19.5%) reported problems getting necessary medical treatment or visiting a physician. Higher anxiety levels (p = 0.004) emerged as the main factor associated with medical undertreatment. The main risk factors for postponement of least one medical appointment (n = 91) were higher depression (p = 0.013) and anxiety (p = 0.05) symptoms as well as female sex (p ≤ 0.0001) and documented arrhythmias (p = 0.007) indicating a particular risk group of cardiovascular complications. In contrast, frequent physical activity identified patients at lower risk.ConclusionIn ACHD anxiety and depressive symptoms handicap patients to receive medical care. Postponement of medical appointments additionally relates to female sex and documented arrhythmias. The latter indicates that patients at high risk of adverse cardiac outcome avoid routine medical care. Our data may lead policy makers to develop strategies for the provision of medical services to particular vulnerable patient groups, and to optimize management of both future pandemics and daily routine.

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“…In addition, premature death is common in ACHD patients, with cardiac insufficiency being usually responsible for death [ 9 ]. In Germany, only 22,000 ACHD subjects out of 330,000 adults with CHD are examined in ACHD accredited centres [ 10 ]. Over 200,000 ACHD patients are seen by general cardiologists [ 11 ].…”

Section: Introductionmentioning

confidence: 99%

Strategies to Aid Successful Transition of Adolescents with Congenital Heart Disease: A Systematic Review

et al. 2023

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The majority of patients born with congenital heart disease (CHD) need lifelong surveillance with serial clinical attendance and examinations. However, loss of follow-up (namely no documented follow-up for 3 years or more) is a recognised common problem since it is often related to remarkable worsening in the health of CHD patients with increased morbidity and mortality. Transitioning from paediatric to adult care has proven to be the most vulnerable point in the care of these subjects. As such, a systematic review was carried out to ask the following questions: What is the percentage of loss of follow-up worldwide? Are there regional fluctuations in the percentage? Is there a link between loss of follow-up and the complexity of CHD? What strategies should be employed to lower the risk of discontinuity in care? The most recent worldwide averaged loss of follow-up is 26.1%, with significant fluctuations across continents and countries. This percentage is even higher (31.9%) when one includes all untraceable patients, presuming that they are not having any cardiac follow-up. The highest discontinuity of care was reported in the USA and in patients with simple CHD. Planning the rules of transition seems to be one of the most reliable tools to minimise the number of CHD patients who are lost in transition. Recalling patients, with general practitioners who are crucial in readdressing half of the lost to follow-up CHD patients to adult CHD specialists, and a good relationship between paediatric cardiologists and the adult CHD team are two other valuable strategies in aiding successful transition.

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Medizinische Versorgung von Erwachsenen mit angeborenen Herzfehlern

Cited by 10 publications

References 60 publications

Facts about the General Medical Care of Adults with Congenital Heart Defects: Experience of a Tertiary Care Center

Facts about the General Medical Care of Adults with Congenital Heart Defects: Experience of a Tertiary Care Center

Impact of COVID-19 on Medical Supply in Adults With Congenital Heart Disease

Strategies to Aid Successful Transition of Adolescents with Congenital Heart Disease: A Systematic Review

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