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

BACKGROUND: A 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 o...

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Autores principales: Helm, Paul C., Kaemmerer, Harald, Breithardt, Günter, Sticker, Elisabeth J., Keuchen, Roland, Neidenbach, Rhoia, Diller, Gerhard-Paul, Tutarel, Oktay, Bauer, Ulrike M. M.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Frontiers Media S.A. 2017
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5437851/
https://www.ncbi.nlm.nih.gov/pubmed/28580351
http://dx.doi.org/10.3389/fped.2017.00115
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author Helm, Paul C.
Kaemmerer, Harald
Breithardt, Günter
Sticker, Elisabeth J.
Keuchen, Roland
Neidenbach, Rhoia
Diller, Gerhard-Paul
Tutarel, Oktay
Bauer, Ulrike M. M.
author_facet Helm, Paul C.
Kaemmerer, Harald
Breithardt, Günter
Sticker, Elisabeth J.
Keuchen, Roland
Neidenbach, Rhoia
Diller, Gerhard-Paul
Tutarel, Oktay
Bauer, Ulrike M. M.
author_sort Helm, Paul C.
collection PubMed
description BACKGROUND: A 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 METHODS: An 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.” RESULTS: Among 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.” CONCLUSION: The 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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spelling pubmed-54378512017-06-02 Transition in Patients with Congenital Heart Disease in Germany: Results of a Nationwide Patient Survey Helm, Paul C. Kaemmerer, Harald Breithardt, Günter Sticker, Elisabeth J. Keuchen, Roland Neidenbach, Rhoia Diller, Gerhard-Paul Tutarel, Oktay Bauer, Ulrike M. M. Front Pediatr Pediatrics BACKGROUND: A 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 METHODS: An 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.” RESULTS: Among 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.” CONCLUSION: The 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. Frontiers Media S.A. 2017-05-19 /pmc/articles/PMC5437851/ /pubmed/28580351 http://dx.doi.org/10.3389/fped.2017.00115 Text en Copyright © 2017 Helm, Kaemmerer, Breithardt, Sticker, Keuchen, Neidenbach, Diller, Tutarel and Bauer. http://creativecommons.org/licenses/by/4.0/ This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) or licensor are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.
spellingShingle Pediatrics
Helm, Paul C.
Kaemmerer, Harald
Breithardt, Günter
Sticker, Elisabeth J.
Keuchen, Roland
Neidenbach, Rhoia
Diller, Gerhard-Paul
Tutarel, Oktay
Bauer, Ulrike M. M.
Transition in Patients with Congenital Heart Disease in Germany: Results of a Nationwide Patient Survey
title Transition in Patients with Congenital Heart Disease in Germany: Results of a Nationwide Patient Survey
title_full Transition in Patients with Congenital Heart Disease in Germany: Results of a Nationwide Patient Survey
title_fullStr Transition in Patients with Congenital Heart Disease in Germany: Results of a Nationwide Patient Survey
title_full_unstemmed Transition in Patients with Congenital Heart Disease in Germany: Results of a Nationwide Patient Survey
title_short Transition in Patients with Congenital Heart Disease in Germany: Results of a Nationwide Patient Survey
title_sort transition in patients with congenital heart disease in germany: results of a nationwide patient survey
topic Pediatrics
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5437851/
https://www.ncbi.nlm.nih.gov/pubmed/28580351
http://dx.doi.org/10.3389/fped.2017.00115
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