Representativeness of the German National Register for Congenital Heart Defects: a clinically oriented analysis

Helm, P.; Koerten, Marc-André; Abdul‐Khaliq, Hashim; Baumgartner, Helmut; Kececioglu, Deniz; Bauer, Ulrike

doi:10.1017/s1047951115001547

Cited by 34 publications

(38 citation statements)

References 10 publications

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“…For the recruitment of study participants, the patients' database of the NRCHD was used. Comprising data from more than 52 582 registered patients (as of May 2017) the NRCHD is the largest database of CHD in Europe and is representative of the German cohort of patients with CHD . The study participants were surveyed online.…”

Section: Methodsmentioning

confidence: 99%

Congenital heart disease patients' and parents' perception of disease-specific knowledge: Health and impairments in everyday life

Helm

Kempert

Körten

et al. 2018

Congenital Heart Disease

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Section: Methodsmentioning

confidence: 99%

Congenital heart disease patients' and parents' perception of disease-specific knowledge: Health and impairments in everyday life

Helm

Kempert

Körten

et al. 2018

Congenital Heart Disease

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“…7245 children with CHD were reported by 260 pediatric cardiology institutions resulting in an overall CHD prevalence of 1.08% . Helm et al compared the prevalence rates of the PAN study and the National Register for Congenital Heart Defects (NRCHD) and reported that the NRCHD is a clinical registry with primarily clinical healthcare relevant cases . It must be pointed out that all CHD were included in the PAN study regardless of their actual clinical relevance.…”

Section: Introductionmentioning

confidence: 99%

Changing prevalence of severe congenital heart disease: Results from the National Register for Congenital Heart Defects in Germany

Pfitzer

Helm

Ferentzi

et al. 2017

Congenital Heart Disease

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“…It is representative of the German cohort of patients with CHD (28). For patient recruitment, the register’s database was searched for patients who were 18 years or older at the time of the survey and for whom an email address was available.…”

Section: Methodsmentioning

confidence: 99%

Transition in Patients with Congenital Heart Disease in Germany: Results of a Nationwide Patient Survey

et al. 2017

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BackgroundA growing number of adults with congenital heart disease (ACHD) pose a particular challenge for health care systems across the world. Upon turning into 18 years, under the German national health care system, ACHD patients are required to switch from a pediatric to an adult cardiologist or an ACHD-certified provider. To date, reliable data investigating the treatment situation of ACHD patients in Germany are not available.Materials and methodsAn online survey was conducted in collaboration with patient organizations to address the life situation and the conditions of health care provision for ACHD patients in Germany. ACHD patients were recruited from the database of the National Register for Congenital Heart Defects (NRCHD) and informed about the survey via email, websites, and social networks. A total of 1,828 ACHD patients (1,051 females) participated in this study. The mean age was 31.7 ± 11.7 years. Participants were surveyed about treating physicians and the institution mainly involved in the treatment of their CHD. In addition, participants were asked questions to assess the level of trust toward their treating physician and their familiarity with the term “ACHD-certified provider.”ResultsAmong the surveyed patients, 25.4% stated that they attended a specific ACHD clinic at a heart center regularly, 32.7% were treated in a private practice setting by a pediatric cardiologist, 32.4% in a private practice (adult) cardiology setting, and 9.5% were treated by an “other physician.” Only 24.4% of the male and 29.7% of the female ACHD patients were familiar with the term “ACHD-certified provider.”ConclusionThe transfer from pediatric cardiology to ACHD care requires further attention as many adult patients have not transferred to certified ACHD providers. The question of whether ACHD patients in Germany are offered consistent and adequate care should also be investigated in more detail. The answers regarding the ACHD certification are particularly disappointing and indicative of a large information gap and inadequate education in clinical practice.

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Representativeness of the German National Register for Congenital Heart Defects: a clinically oriented analysis

Cited by 34 publications

References 10 publications

Congenital heart disease patients' and parents' perception of disease-specific knowledge: Health and impairments in everyday life

Congenital heart disease patients' and parents' perception of disease-specific knowledge: Health and impairments in everyday life

Changing prevalence of severe congenital heart disease: Results from the National Register for Congenital Heart Defects in Germany

Transition in Patients with Congenital Heart Disease in Germany: Results of a Nationwide Patient Survey

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