Recommendations for improving the quality of the interdisciplinary medical care of grown-up with congenital heart disease (GUCH)

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

doi:10.1016/j.ijcard.2010.02.031

Cited by 37 publications

(31 citation statements)

References 9 publications

(5 reference statements)

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“…Major advances in the diagnosis, management and treatment of CHD over the past few decades have led to a marked increase in the number of patients with CHD surviving into adulthood [7]. Today, the majority of patients with CHD seen in clinical practice are adults, and it is likely that they will continue to represent the largest proportion of patients requiring life-long medical care in the short-to-medium term [10,11]. The estimated prevalence of CHD is approximately six to 10 per 1,000 live births [12,13] and 4-15% of patients with CHD will go on to develop PAH [14].…”

Section: Demographics Of Pah-chdmentioning

confidence: 99%

Pulmonary arterial hypertension associated with congenital heart disease

D′Alto

Mahadevan

2012

European Respiratory Review

151

110

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Section: Demographics Of Pah-chdmentioning

confidence: 99%

Pulmonary arterial hypertension associated with congenital heart disease

D′Alto

Mahadevan

2012

European Respiratory Review

151

110

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“…Increasingly, efforts are made to accredit ACHD centers. 22 This process does not, in itself, limit choice and competition; however, healthcare insurers should resist the temptation to regard all accredited centers as equal and limit patient choice (eg, by reimbursing treatment only at the closest center).…”

Section: Discussionmentioning

confidence: 99%

Choice and Competition Between Adult Congenital Heart Disease Centers

Diller

Kempny

Piórkowski

et al. 2014

Circ: Cardiovascular Quality and Outcomes

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Background-Although concentrating adult congenital heart disease services at high-volume centers has been widely advocated, the potential beneficial effects of competition and patient choice have received relatively little attention. We aimed to assess the degree of patient choice and competition between adult congenital heart disease units and to investigate whether competition indices correlate with clinical quality or research output. Methods and Results-Competition between the 10 major adult congenital heart disease units in England was evaluated based on the Herfindahl-Hirschman Index, representing the sum of squared market shares of individual units. In addition, to account for geography and feasible access, we calculated spatial indices of competition based on travel time by road. These indices were correlated with 30-day mortality postpulmonary valve replacement in adult patients (as obtained from the National Central Cardiac Audit Database) and the aggregate research impact factors of individual centers. On a national level, a high level of competition without obvious dominant players was found (Herfindahl-Hirschman Index between 0.107 and 0.013). When accounting for geography, however, important disparities in patient choice and competition faced by individual centers emerged. The degree of local competition was correlated significantly with clinical outcomes and research output. In contrast, no association between center volume and outcome could be established. Conclusions-Beyond the usual focus on concentrating services at high-volume centers, the potentially beneficial effects of competition should not be ignored. Therefore, policymakers should consider fostering a competitive environment for adult congenital heart disease centers or at least avoiding creating government-granted monopolies in the field.(Circ Cardiovasc Qual Outcomes. 2014;7:285-291.)

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“…Nach neueren Schätzungen liegt die Herzfehlerhäu-figkeit bei Neugeborenen zwischen 5,2 und 7,1 von 1000 [16,22]. Dementsprechend kann man in Abhängigkeit von den Geburtenzahlen davon ausgehen, dass in Deutschland jährlich etwa 6000 Kinder mit einer Herz-oder Gefäßfehlbildung geboren werden [7,15].…”

Section: Epidemiologieunclassified

“…Trotz aller Fortschritte der medikamentösen, interventionellen oder chirurgischen Behandlung bestehen bei vielen Patienten anatomische und funktionelle Rest-und Folgezustände, mit negativen Auswirkungen auf Lebensqualität, Leistungs-und Arbeitsfähigkeit. Diese Zustände sind für die pathologische Anatomie des Herzfehlers oder die Art des therapeutischen Eingriffs typisch [7].…”

Section: Spezifische Probleme Im Erwachsenenalterunclassified

“…Dennoch bestehen in allen Ländern teils erhebliche Versorgungslü-cken für die betroffenen Patienten. Seit kurzer Zeit existiert in Deutschland das Konzept einer strukturierten Versorgung von Erwachsenen mit angeborenen Herzfehlern (EMAH; [5,7]). > Derzeit erreichen mehr als 90% der Betroffenen das Erwachsenenalter Beginnend Ende der 1930er Jahren konnte die primär hohe Letalität von angeborenen Herz-und Gefäßanomalien durch die großen Fortschritte im Bereich der Kinderkardiologie, Kardiologie und insbesondere der Herzchirurgie von 80% so weit gesenkt werden, das derzeit mehr als 90% der Betroffenen das Erwachsenenalter erreichen (.…”

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Angeborene Herzfehler im Erwachsenenalter

Kaemmerer

Hess

2009

Internist

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There is a increasing clinical and scientific interest in adults with congenital heart disease. Germany is among, if not the first country worldwide, with a structured care of adults with congenital heart disease. Due to the advances in cardiology and in heart surgery, the primarily high mortality rate of relevant congenital heart disease has declined from 80% to less than 20% during the recent decades. Currently, in Europe the estimated number of adults with congenital heart disease is between 1.2 and 2.7 Mio., and the number in Germany exceeds 180,000. Almost all congenital heart defects, either native or interventionally or surgically treated, need regular control, since even after successful primary treatment significant residua or sequels have to be expected. Optimal care of these patients begins in the childhood and must be continued down to the high adulthood. The complexity of congenital heart defects makes a multidisciplinary approach necessary. A specialized, interdisciplinary cooperation between cardiologists, pediatric cardiologists, cardiac surgeons and other specialists is mandatory.

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Recommendations for improving the quality of the interdisciplinary medical care of grown-up with congenital heart disease (GUCH)

Cited by 37 publications

References 9 publications

Pulmonary arterial hypertension associated with congenital heart disease

Pulmonary arterial hypertension associated with congenital heart disease

Choice and Competition Between Adult Congenital Heart Disease Centers

Angeborene Herzfehler im Erwachsenenalter

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