Universität zu Köln

Helm, Paul C., Kaemmerer, Harald, Breithardt, Guenter, Sticker, Elisabeth J., Keuchen, Roland, Neidenbach, Rhoia, Diller, Gerhard-Paul, Tutarel, Oktay ORCID: 0000-0002-5201-5509 and Bauer, Ulrike M. M. (2017). Transition in Patients with Congenital Heart Disease in Germany: Results of a Nationwide Patient Survey. Front. Pediatr., 5. LAUSANNE: FRONTIERS MEDIA SA. ISSN 2296-2360

Full text not available from this repository.

Abstract

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.

Item Type:	Journal Article
Creators:	Creators Email ORCID ORCID Put Code Helm, Paul C. UNSPECIFIED UNSPECIFIED UNSPECIFIED Kaemmerer, Harald UNSPECIFIED UNSPECIFIED UNSPECIFIED Breithardt, Guenter UNSPECIFIED UNSPECIFIED UNSPECIFIED Sticker, Elisabeth J. UNSPECIFIED UNSPECIFIED UNSPECIFIED Keuchen, Roland UNSPECIFIED UNSPECIFIED UNSPECIFIED Neidenbach, Rhoia UNSPECIFIED UNSPECIFIED UNSPECIFIED Diller, Gerhard-Paul UNSPECIFIED UNSPECIFIED UNSPECIFIED Tutarel, Oktay UNSPECIFIED orcid.org/0000-0002-5201-5509 UNSPECIFIED Bauer, Ulrike M. M. UNSPECIFIED UNSPECIFIED UNSPECIFIED
URN:	urn:nbn:de:hbz:38-230997
DOI:	10.3389/fped.2017.00115
Journal or Publication Title:	Front. Pediatr.
Volume:	5
Date:	2017
Publisher:	FRONTIERS MEDIA SA
Place of Publication:	LAUSANNE
ISSN:	2296-2360
Language:	English
Faculty:	Unspecified
Divisions:	Unspecified
Subjects:	no entry
Uncontrolled Keywords:	Keywords Language POSITION PAPER; TASK-FORCE; FOLLOW-UP; ADULTS; SOCIETY; CARE; MANAGEMENT; RECOMMENDATIONS; GUIDELINES; CARDIOLOGY Multiple languages Pediatrics Multiple languages
Refereed:	Yes
URI:	http://kups.ub.uni-koeln.de/id/eprint/23099