Recommendations for adult and paediatric cardiologists on obtaining additional qualification in “Adults with Congenital Heart Disease” (ACHD)

Hess, John; Bauer, Ulrike; Haan, Fokko de; Flesh, Julia; Gohlke-Baerwolf, Christa; Hagl, S.; Hofbeck, Michael; Kaemmerer, Harald; Kallfelz, H. C.; Lange, Peter; Nock, Hermine; Schirmer, K; Schmaltz, A. A.; Tebbe, Ulrich; Weyand, Michael; Breithardt, G

doi:10.1016/j.ijcard.2010.01.007

Cited by 21 publications

(9 citation statements)

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“…However, the care structures in Germany at that time did not meet the demand sufficiently. Therefore, in 2005, an interdisciplinary working group developed the recommendations and guidelines for optimized ACHD care and physician training that are used today [16]. The ideal care structure was proposed as a pyramid-like system in three stages (Figure 1), with interaction between the three different care levels considered essential [17].…”

Section: Introductionmentioning

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: Introductionmentioning

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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“…A fellowship at a tertiary centre to obtain the certification could establish an instant relationship. Adult CHD certification and training practices in other countries [28][29][30][31][32] may guide the developing certification process in Belgium. Moreover, Baumgartner et al described the appropriate level of training to become an adult CHD cardiologist.…”

Section: Improve Referral (1) Through Direct Communication In Cases Wmentioning

confidence: 99%

Opinions of general and adult congenital heart disease cardiologists on care for adults with congenital heart disease in Belgium: a qualitative study

et al. 2019

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Background:The growing adult congenital heart disease (CHD) population requires efficient healthcare organisation. It has been suggested that clinically appropriate care be provided for individual patients on the least complex level possible, in order to alleviate saturation of special care programmes.Methods:Semi-structured interviews with 10 general and 10 adult CHD cardiologists were conducted to elucidate opinions on healthcare organisation in Belgium. A particular focus was placed on the potential role of general cardiologists. The software program NVivo 12 facilitated thematic analysis.Results:A discrepancy existed between how general cardiologists thought about congenital care and what adult CHD cardiologists considered the minimum knowledge required to adequately treat patients. Qualitative data were categorised under the following themes: knowledge dissemination, certification, (de)centralisation of care, the role of adult CHD cardiologists, the role of dedicated nurse specialists, and patient referral. It appeared to be pivotal to organise care in such a way that providing basic care locally does not impede the generation of sufficient patient volume, and to continue improving communications between different care levels when there is no referral back. Moreover, practical knowledge is best disseminated locally. Cardiologists’ opinions on certification and on the role of dedicated nurse specialists were mixed.Conclusion:On the basis of the results, we propose five recommendations for improving the provision of care to adults with CHD. A multidimensional approach to defining the role of different healthcare professionals, to improving communication channels, and to effectively sensitising healthcare professionals is needed to improve the organisation of care.

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“…EMAH-Patienten defi niert [3,4]. Diese können als Grundlage für die Strukturierung der Versorgung von Jugendlichen und jungen Erwachsenen mit Krebserkrankungen dienen.…”

Section: Tumorerkrankungen Bei Jugendlichen Und Jungen Erwachsenen (Aunclassified

Tumorerkrankungen bei Jugendlichen und jungen Erwachsenen (AYA) – Parallelen und Unterschiede zu jungen Erwachsenen mit einem angeborenen Herzfehler (EMAH)

Paul¹,

Grabitz²

2014

Klin Padiatr

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Recommendations for adult and paediatric cardiologists on obtaining additional qualification in “Adults with Congenital Heart Disease” (ACHD)

Cited by 21 publications

References 2 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

Opinions of general and adult congenital heart disease cardiologists on care for adults with congenital heart disease in Belgium: a qualitative study

Tumorerkrankungen bei Jugendlichen und jungen Erwachsenen (AYA) – Parallelen und Unterschiede zu jungen Erwachsenen mit einem angeborenen Herzfehler (EMAH)

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