Systematic assessment of health care perception in adults with congenital heart disease in Germany (2024)

Neidenbach, R., Achenbach, S., Andonian, C., Bauer, U. M. M., Ewert, P., Freilinger, S., Gundlach, U., Kaemmerer, A-S., Nagdyman, N., Nebel, K., Oberhoffer, R., Pieper, L., Reinhard, W., Sanftenberg, L., von Scheidt, F., Schelling, J., Seidel, L., Weyand, M., & Kaemmerer, H. (2021). Systematic assessment of health care perception in adults with congenital heart disease in Germany. Cardiovascular diagnosis and therapy, 11(2), 481-491. https://doi.org/10.21037/cdt-20-825

Neidenbach, Rhoia ; Achenbach, Stephan ; Andonian, Caroline et al. / Systematic assessment of health care perception in adults with congenital heart disease in Germany. in: Cardiovascular diagnosis and therapy. 2021 ; Band 11, Nr. 2. S. 481-491.

@article{997e3e7f8c074a0d956bd2a94740dd54,

title = "Systematic assessment of health care perception in adults with congenital heart disease in Germany",

abstract = "Background: The number of adults with congenital heart disease (ACHD) is steadily rising due to increased survival rate and improved medical resources. Accordingly, more than 330,000 ACHD are currently living in Germany. Almost all of them require lifelong specialized medical follow-up for their chronic heart disease, often accompanied by residua, sequelae, or comorbidities. Primary care physicians (PCPs) are a crucial factor in directing patients to ACHD specialists or specialized institutions, but despite all efforts, the number of ACHD under specialized care is low, the lost-to-follow-up rate is high, and the morbidity and mortality is substantial. The present cross-sectional study was designed to systematically characterize the health care of ACHD from a patient perspective, including (I) use of medical care by ACHD, (II) medical counselling needs, and (III) perceived satisfaction with health care.Methods: The German-wide analysis was based on a 25-item questionnaire designed to address different aspects of medical status and health issues of ACHD from their own perspective, performed between May of 2017 and July of 2020.Results: A total of 4,008 ACHD (52% female; mean age 41.9±17.2 years) completed the questionnaire. The majority of ACHD (3,524, 87.9%) reported, that they consulted their PCP for non-cardiac health problems, and 49.7% (n=1,991) consulted their PCP also for medical problems associated with the underlying CHD. Almost all ACHD reported a need for medical advice concerning exercise capacity and daily life activities, occupational skills, pregnancy, rehabilitation, genetic counselling, insurance, and retirement. A total of 1,840 (45.9%) patients were not aware of the existence of certified ACHD specialists or centers. Moreover, 2,552 (67.6%) of those surveyed were uninformed about patient organizations for ACHD.Conclusions: The present study demonstrates that ACHD are largely uninformed about the ACHD care structures available nationwide, although the patients have a great need for specialized follow-up, advice, and care.",

keywords = "Adults with congenital heart disease (ACHD), Congenital heart disease (CHD), General practitioners, Medical health supply, Primary care physicians (PCPs), Primary health care",

author = "Rhoia Neidenbach and Stephan Achenbach and Caroline Andonian and Bauer, {Ulrike M M} and Peter Ewert and Sebastian Freilinger and Ulrike Gundlach and Ann-Sophie Kaemmerer and Nicole Nagdyman and Kathrin Nebel and Renate Oberhoffer and Lars Pieper and Wibke Reinhard and Linda Sanftenberg and {von Scheidt}, Fabian and J{\"o}rg Schelling and Lavinia Seidel and Michael Weyand and Harald Kaemmerer",

note = "Funding Information: As an immediate response to our present study, educational campaigns have been launched nationwide on television, the general press, and the Internet, supported by the German Heart Societies, patient organizations (e.g., German Heart Foundation, Herzkind e.V.), and even with the support of the pharmaceutical industry. In addition, other medical specialties, including general medicine, internal medicine, intensive care medicine, rehabilitation medicine, gynecology and obstetrics, genetics, psychology and psychiatry, sociology, nutrition, and sports medicine, are increasingly obtaining information at conferences and congresses in the Funding Information: The authors would like to thank the German Heart Foundation (“Deutsche Herzstiftung e.V.”), the patient organization “Herzkind e.V.”, and the German health care insurance AOK-Bayern for the promotion of ACHD research or co-funding the survey. This study was also funded as an investigator-initiated study by Actelion Pharmaceuticals, Germany, GmbH. Further, the authors would like to thank the Competence Network for Congenital Heart Defects, which has received funding from the Federal Ministry of Education and Research, grant number 01GI0601 (until 2014), and the DZHK (German Centre for Cardiovascular Research, as of 2015) for the support. We explicitly thank Dr. Claudia S. Copeland for the professional editing of the final draft of the manuscript. Funding: This research was funded by the German Heart Foundation (“Deutsche Herzstiftung e.V.”), grant number F-30-15, the patient organization “Herzkind e.V.” and Actelion Pharmaceuticals Germany GmbH, grant number MED-2015-495. Publisher Copyright: {\textcopyright} Cardiovascular Diagnosis and Therapy. All rights reserved.",

year = "2021",

month = apr,

doi = "10.21037/cdt-20-825",

language = "English",

volume = "11",

pages = "481--491",

journal = "Cardiovascular diagnosis and therapy",

issn = "2223-3652",

number = "2",

}

Neidenbach, R, Achenbach, S, Andonian, C, Bauer, UMM, Ewert, P, Freilinger, S, Gundlach, U, Kaemmerer, A-S, Nagdyman, N, Nebel, K, Oberhoffer, R, Pieper, L, Reinhard, W, Sanftenberg, L, von Scheidt, F, Schelling, J, Seidel, L, Weyand, M & Kaemmerer, H 2021, 'Systematic assessment of health care perception in adults with congenital heart disease in Germany', Cardiovascular diagnosis and therapy, Jg. 11, Nr. 2, S. 481-491. https://doi.org/10.21037/cdt-20-825

Systematic assessment of health care perception in adults with congenital heart disease in Germany. / Neidenbach, Rhoia; Achenbach, Stephan; Andonian, Caroline et al.

in: Cardiovascular diagnosis and therapy, Band 11, Nr. 2, 04.2021, S. 481-491.

Veröffentlichungen: Beitrag in Fachzeitschrift › Artikel › Peer Reviewed

TY - JOUR

T1 - Systematic assessment of health care perception in adults with congenital heart disease in Germany

AU - Neidenbach, Rhoia

AU - Achenbach, Stephan

AU - Andonian, Caroline

AU - Bauer, Ulrike M M

AU - Ewert, Peter

AU - Freilinger, Sebastian

AU - Gundlach, Ulrike

AU - Kaemmerer, Ann-Sophie

AU - Nagdyman, Nicole

AU - Nebel, Kathrin

AU - Oberhoffer, Renate

AU - Pieper, Lars

AU - Reinhard, Wibke

AU - Sanftenberg, Linda

AU - von Scheidt, Fabian

AU - Schelling, Jörg

AU - Seidel, Lavinia

AU - Weyand, Michael

AU - Kaemmerer, Harald

N1 - Funding Information:As an immediate response to our present study, educational campaigns have been launched nationwide on television, the general press, and the Internet, supported by the German Heart Societies, patient organizations (e.g., German Heart Foundation, Herzkind e.V.), and even with the support of the pharmaceutical industry. In addition, other medical specialties, including general medicine, internal medicine, intensive care medicine, rehabilitation medicine, gynecology and obstetrics, genetics, psychology and psychiatry, sociology, nutrition, and sports medicine, are increasingly obtaining information at conferences and congresses in theFunding Information:The authors would like to thank the German Heart Foundation (“Deutsche Herzstiftung e.V.”), the patient organization “Herzkind e.V.”, and the German health care insurance AOK-Bayern for the promotion of ACHD research or co-funding the survey. This study was also funded as an investigator-initiated study by Actelion Pharmaceuticals, Germany, GmbH. Further, the authors would like to thank the Competence Network for Congenital Heart Defects, which has received funding from the Federal Ministry of Education and Research, grant number 01GI0601 (until 2014), and the DZHK (German Centre for Cardiovascular Research, as of 2015) for the support. We explicitly thank Dr. Claudia S. Copeland for the professional editing of the final draft of the manuscript. Funding: This research was funded by the German Heart Foundation (“Deutsche Herzstiftung e.V.”), grant number F-30-15, the patient organization “Herzkind e.V.” and Actelion Pharmaceuticals Germany GmbH, grant number MED-2015-495.Publisher Copyright:© Cardiovascular Diagnosis and Therapy. All rights reserved.

PY - 2021/4

Y1 - 2021/4

N2 - Background: The number of adults with congenital heart disease (ACHD) is steadily rising due to increased survival rate and improved medical resources. Accordingly, more than 330,000 ACHD are currently living in Germany. Almost all of them require lifelong specialized medical follow-up for their chronic heart disease, often accompanied by residua, sequelae, or comorbidities. Primary care physicians (PCPs) are a crucial factor in directing patients to ACHD specialists or specialized institutions, but despite all efforts, the number of ACHD under specialized care is low, the lost-to-follow-up rate is high, and the morbidity and mortality is substantial. The present cross-sectional study was designed to systematically characterize the health care of ACHD from a patient perspective, including (I) use of medical care by ACHD, (II) medical counselling needs, and (III) perceived satisfaction with health care.Methods: The German-wide analysis was based on a 25-item questionnaire designed to address different aspects of medical status and health issues of ACHD from their own perspective, performed between May of 2017 and July of 2020.Results: A total of 4,008 ACHD (52% female; mean age 41.9±17.2 years) completed the questionnaire. The majority of ACHD (3,524, 87.9%) reported, that they consulted their PCP for non-cardiac health problems, and 49.7% (n=1,991) consulted their PCP also for medical problems associated with the underlying CHD. Almost all ACHD reported a need for medical advice concerning exercise capacity and daily life activities, occupational skills, pregnancy, rehabilitation, genetic counselling, insurance, and retirement. A total of 1,840 (45.9%) patients were not aware of the existence of certified ACHD specialists or centers. Moreover, 2,552 (67.6%) of those surveyed were uninformed about patient organizations for ACHD.Conclusions: The present study demonstrates that ACHD are largely uninformed about the ACHD care structures available nationwide, although the patients have a great need for specialized follow-up, advice, and care.

AB - Background: The number of adults with congenital heart disease (ACHD) is steadily rising due to increased survival rate and improved medical resources. Accordingly, more than 330,000 ACHD are currently living in Germany. Almost all of them require lifelong specialized medical follow-up for their chronic heart disease, often accompanied by residua, sequelae, or comorbidities. Primary care physicians (PCPs) are a crucial factor in directing patients to ACHD specialists or specialized institutions, but despite all efforts, the number of ACHD under specialized care is low, the lost-to-follow-up rate is high, and the morbidity and mortality is substantial. The present cross-sectional study was designed to systematically characterize the health care of ACHD from a patient perspective, including (I) use of medical care by ACHD, (II) medical counselling needs, and (III) perceived satisfaction with health care.Methods: The German-wide analysis was based on a 25-item questionnaire designed to address different aspects of medical status and health issues of ACHD from their own perspective, performed between May of 2017 and July of 2020.Results: A total of 4,008 ACHD (52% female; mean age 41.9±17.2 years) completed the questionnaire. The majority of ACHD (3,524, 87.9%) reported, that they consulted their PCP for non-cardiac health problems, and 49.7% (n=1,991) consulted their PCP also for medical problems associated with the underlying CHD. Almost all ACHD reported a need for medical advice concerning exercise capacity and daily life activities, occupational skills, pregnancy, rehabilitation, genetic counselling, insurance, and retirement. A total of 1,840 (45.9%) patients were not aware of the existence of certified ACHD specialists or centers. Moreover, 2,552 (67.6%) of those surveyed were uninformed about patient organizations for ACHD.Conclusions: The present study demonstrates that ACHD are largely uninformed about the ACHD care structures available nationwide, although the patients have a great need for specialized follow-up, advice, and care.

KW - Adults with congenital heart disease (ACHD)

KW - Congenital heart disease (CHD)

KW - General practitioners

KW - Medical health supply

KW - Primary care physicians (PCPs)

KW - Primary health care

UR - http://www.scopus.com/inward/record.url?scp=85105099690&partnerID=8YFLogxK

U2 - 10.21037/cdt-20-825

DO - 10.21037/cdt-20-825

M3 - Article

C2 - 33968627

VL - 11

SP - 481

EP - 491

JO - Cardiovascular diagnosis and therapy

JF - Cardiovascular diagnosis and therapy

SN - 2223-3652

IS - 2

ER -

Neidenbach R, Achenbach S, Andonian C, Bauer UMM, Ewert P, Freilinger S et al. Systematic assessment of health care perception in adults with congenital heart disease in Germany. Cardiovascular diagnosis and therapy. 2021 Apr;11(2):481-491. doi: 10.21037/cdt-20-825