Mental Health Treatment in Adults with Congenital Heart Disease in Germany: An Online, Cross-Sectional Study of Status, Needs, and Treatment Reasons

Improved medical treatments have extended survival and life expectancy in adults with congenital heart defects (ACHD), placing greater emphasis on psychosocial health. Up to one-third of ACHD experience anxiety or depression, and half develop a mental illness during their lifetime. While there is so...

Full description

Saved in:
Bibliographic Details
Main Authors: Anna-Lena Ehmann, Emily Schütte, Janina Semmler, Felix Berger, Ulrike M. M. Bauer, Katharina Schmitt, Constanze Pfitzer, Paul C. Helm
Format: Article
Language:English
Published: MDPI AG 2025-06-01
Series:Journal of Cardiovascular Development and Disease
Subjects:
Online Access:https://www.mdpi.com/2308-3425/12/6/231
Tags: Add Tag
No Tags, Be the first to tag this record!
_version_ 1849432118794387456
author Anna-Lena Ehmann
Emily Schütte
Janina Semmler
Felix Berger
Ulrike M. M. Bauer
Katharina Schmitt
Constanze Pfitzer
Paul C. Helm
author_facet Anna-Lena Ehmann
Emily Schütte
Janina Semmler
Felix Berger
Ulrike M. M. Bauer
Katharina Schmitt
Constanze Pfitzer
Paul C. Helm
author_sort Anna-Lena Ehmann
collection DOAJ
description Improved medical treatments have extended survival and life expectancy in adults with congenital heart defects (ACHD), placing greater emphasis on psychosocial health. Up to one-third of ACHD experience anxiety or depression, and half develop a mental illness during their lifetime. While there is solid evidence on the prevalence of mental health, many do not receive psychological, psychotherapeutic, or psychiatric treatment (PST) and the psychological care situation remains understudied. In a nationwide, online cross-sectional survey conducted in Q1 2024, 1486 ACHD aged 18 to 85 (M<sub>age</sub> = 36.84 years; 60.8% female) registered in the German National Register for Congenital Heart Defects (NRCHD) completed self-report questionnaires on sociodemographics, illness identity (Illness Identity Questionnaire), mental well-being, and utilisation of PST. CHD diagnoses were determined in conformity with the International Pediatric and Congenital Cardiac Code (IPCCC) and CHD was classified according to Warnes et al. (simple/moderate/complex). Analyses included chi-square tests, t-tests, and binary logistic regression. Overall, 32.8% of participants reported current and/or previous PST (women 37.5%, men 25.3%). PST utilisation was significantly higher in those with complex (40.2%) compared to moderate (29.6%) and simple CHD (25.3%) (<i>p</i>s < 0.01). Primary treatment reasons were mental illness (41.7%) and CHD-related concerns (37.2%). Nearly half of treatments were self-initiated (45.8%) and about one-third were physician-recommended (30.8%). Logistic regression revealed CHD severity as a significant predictor of PST use (<i>p</i>s < 0.05), with lower odds for simple (OR = 0.48) and moderate (OR = 0.66) compared to complex CHD when controlling for sex (<i>p</i> < 0.001, OR = 1.87), age (<i>p</i> = 0.022, OR = 1.011), education level (<i>p</i>s between 0.060 and 0.780), and net income (<i>p</i>s < 0.05). Those receiving PST showed significantly higher maladaptive illness-identity scores (engulfment, rejection) and lower acceptance. Approximately one in three ACHD requires mental health support, particularly those with complex CHD. The CHD itself acts as a key stressor and treatment motivator. Findings underscore the need for integrated care linking cardiological and psychosocial services. Routine screening for psychological distress and low-threshold access to PST—also for patients with simple and moderate CHD—are essential to identify and address mental health needs early.
format Article
id doaj-art-78c3aaf239cd4ef5b7e0e9b267e46ed0
institution Kabale University
issn 2308-3425
language English
publishDate 2025-06-01
publisher MDPI AG
record_format Article
series Journal of Cardiovascular Development and Disease
spelling doaj-art-78c3aaf239cd4ef5b7e0e9b267e46ed02025-08-20T03:27:26ZengMDPI AGJournal of Cardiovascular Development and Disease2308-34252025-06-0112623110.3390/jcdd12060231Mental Health Treatment in Adults with Congenital Heart Disease in Germany: An Online, Cross-Sectional Study of Status, Needs, and Treatment ReasonsAnna-Lena Ehmann0Emily Schütte1Janina Semmler2Felix Berger3Ulrike M. M. Bauer4Katharina Schmitt5Constanze Pfitzer6Paul C. Helm7Department of Congenital Heart Disease—Pediatric Cardiology, Deutsches Herzzentrum der Charité, Augustenburger Platz 1, 13353 Berlin, GermanyDepartment of Congenital Heart Disease—Pediatric Cardiology, Deutsches Herzzentrum der Charité, Augustenburger Platz 1, 13353 Berlin, GermanyDepartment of Obstetrics, Charité-Universitätsmedizin Berlin, Corporate Member of Freie Universität Berlin and Humboldt-Universität zu Berlin, Augustenburger Platz 1, 13353 Berlin, GermanyDepartment of Congenital Heart Disease—Pediatric Cardiology, Deutsches Herzzentrum der Charité, Augustenburger Platz 1, 13353 Berlin, GermanyNational Register for Congenital Heart Defects, Augustenburger Platz 1, 13353 Berlin, GermanyDepartment of Congenital Heart Disease—Pediatric Cardiology, Deutsches Herzzentrum der Charité, Augustenburger Platz 1, 13353 Berlin, GermanyDepartment of Congenital Heart Disease—Pediatric Cardiology, Deutsches Herzzentrum der Charité, Augustenburger Platz 1, 13353 Berlin, GermanyNational Register for Congenital Heart Defects, Augustenburger Platz 1, 13353 Berlin, GermanyImproved medical treatments have extended survival and life expectancy in adults with congenital heart defects (ACHD), placing greater emphasis on psychosocial health. Up to one-third of ACHD experience anxiety or depression, and half develop a mental illness during their lifetime. While there is solid evidence on the prevalence of mental health, many do not receive psychological, psychotherapeutic, or psychiatric treatment (PST) and the psychological care situation remains understudied. In a nationwide, online cross-sectional survey conducted in Q1 2024, 1486 ACHD aged 18 to 85 (M<sub>age</sub> = 36.84 years; 60.8% female) registered in the German National Register for Congenital Heart Defects (NRCHD) completed self-report questionnaires on sociodemographics, illness identity (Illness Identity Questionnaire), mental well-being, and utilisation of PST. CHD diagnoses were determined in conformity with the International Pediatric and Congenital Cardiac Code (IPCCC) and CHD was classified according to Warnes et al. (simple/moderate/complex). Analyses included chi-square tests, t-tests, and binary logistic regression. Overall, 32.8% of participants reported current and/or previous PST (women 37.5%, men 25.3%). PST utilisation was significantly higher in those with complex (40.2%) compared to moderate (29.6%) and simple CHD (25.3%) (<i>p</i>s < 0.01). Primary treatment reasons were mental illness (41.7%) and CHD-related concerns (37.2%). Nearly half of treatments were self-initiated (45.8%) and about one-third were physician-recommended (30.8%). Logistic regression revealed CHD severity as a significant predictor of PST use (<i>p</i>s < 0.05), with lower odds for simple (OR = 0.48) and moderate (OR = 0.66) compared to complex CHD when controlling for sex (<i>p</i> < 0.001, OR = 1.87), age (<i>p</i> = 0.022, OR = 1.011), education level (<i>p</i>s between 0.060 and 0.780), and net income (<i>p</i>s < 0.05). Those receiving PST showed significantly higher maladaptive illness-identity scores (engulfment, rejection) and lower acceptance. Approximately one in three ACHD requires mental health support, particularly those with complex CHD. The CHD itself acts as a key stressor and treatment motivator. Findings underscore the need for integrated care linking cardiological and psychosocial services. Routine screening for psychological distress and low-threshold access to PST—also for patients with simple and moderate CHD—are essential to identify and address mental health needs early.https://www.mdpi.com/2308-3425/12/6/231congenital heart defectmental healthpsychotherapytreatmentACHD
spellingShingle Anna-Lena Ehmann
Emily Schütte
Janina Semmler
Felix Berger
Ulrike M. M. Bauer
Katharina Schmitt
Constanze Pfitzer
Paul C. Helm
Mental Health Treatment in Adults with Congenital Heart Disease in Germany: An Online, Cross-Sectional Study of Status, Needs, and Treatment Reasons
Journal of Cardiovascular Development and Disease
congenital heart defect
mental health
psychotherapy
treatment
ACHD
title Mental Health Treatment in Adults with Congenital Heart Disease in Germany: An Online, Cross-Sectional Study of Status, Needs, and Treatment Reasons
title_full Mental Health Treatment in Adults with Congenital Heart Disease in Germany: An Online, Cross-Sectional Study of Status, Needs, and Treatment Reasons
title_fullStr Mental Health Treatment in Adults with Congenital Heart Disease in Germany: An Online, Cross-Sectional Study of Status, Needs, and Treatment Reasons
title_full_unstemmed Mental Health Treatment in Adults with Congenital Heart Disease in Germany: An Online, Cross-Sectional Study of Status, Needs, and Treatment Reasons
title_short Mental Health Treatment in Adults with Congenital Heart Disease in Germany: An Online, Cross-Sectional Study of Status, Needs, and Treatment Reasons
title_sort mental health treatment in adults with congenital heart disease in germany an online cross sectional study of status needs and treatment reasons
topic congenital heart defect
mental health
psychotherapy
treatment
ACHD
url https://www.mdpi.com/2308-3425/12/6/231
work_keys_str_mv AT annalenaehmann mentalhealthtreatmentinadultswithcongenitalheartdiseaseingermanyanonlinecrosssectionalstudyofstatusneedsandtreatmentreasons
AT emilyschutte mentalhealthtreatmentinadultswithcongenitalheartdiseaseingermanyanonlinecrosssectionalstudyofstatusneedsandtreatmentreasons
AT janinasemmler mentalhealthtreatmentinadultswithcongenitalheartdiseaseingermanyanonlinecrosssectionalstudyofstatusneedsandtreatmentreasons
AT felixberger mentalhealthtreatmentinadultswithcongenitalheartdiseaseingermanyanonlinecrosssectionalstudyofstatusneedsandtreatmentreasons
AT ulrikemmbauer mentalhealthtreatmentinadultswithcongenitalheartdiseaseingermanyanonlinecrosssectionalstudyofstatusneedsandtreatmentreasons
AT katharinaschmitt mentalhealthtreatmentinadultswithcongenitalheartdiseaseingermanyanonlinecrosssectionalstudyofstatusneedsandtreatmentreasons
AT constanzepfitzer mentalhealthtreatmentinadultswithcongenitalheartdiseaseingermanyanonlinecrosssectionalstudyofstatusneedsandtreatmentreasons
AT paulchelm mentalhealthtreatmentinadultswithcongenitalheartdiseaseingermanyanonlinecrosssectionalstudyofstatusneedsandtreatmentreasons