Beyond the Scale: The Hidden Burden of Underweight and Cachexia in Adults with Congenital Heart Defects and Heart Failure—Results from the Pathfinder CHD-Registry

<b>Background/Objectives:</b> Heart failure (HF) poses a major challenge in managing adults with congenital heart defects (ACHD). Emerging evidence suggests that HF in ACHD increases the risk of underweight due to heightened metabolic demands, gastrointestinal complications, and psychological factors such as anxiety and depression. Despite its critical implications, few studies have examined this association. This study evaluates the relationship between HF and underweight-defined as a body mass index (BMI) < 18.5-in ACHD. <b>Methods:</b> The Pathfinder-CHD Registry is a prospective, observational, web-based HF registry including ACHD with manifest HF, history of HF, or significant risk for HF. It documents congenital diagnoses, HF type, comorbidities, and treatments. Patients were categorized by BMI into mild (17.00-18.49), moderate (16.00-16.99), and severe (<16.00) underweight. <b>Results:</b> As of September 2024, the registry enrolled 1420 adults (mean age 31.8±11.3 years; 49.2% female). Underweight was present in 59 patients (4.2%): 62.7% mild, 18.6% moderate, and 18.6% severe. Among the remaining 1361 patients, 52.8% had normal weight, 32.8% were overweight, and 14.2% were obese. Women had significantly lower metabolic body weight than men (<i>p</i> = 0.002). Underweight correlated with younger age (<i>p</i> < 0.001) and CHD type (<i>p</i> = 0.02). Notably, 42.9% of underweight patients had cyanotic CHD. <b>Conclusions:</b> Underweight is an underrecognized problem in ACHD with HF. Adults with complex CHD or connective tissue disorders are disproportionately affected. Underweight should be seen as an alarm sign requiring personalized, multidisciplinary management, including nutritional support, tailored therapy, and close monitoring to improve outcomes.

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Publication Details

Journal
Journal of Clinical Medicine
Published
2025-06-18
DOI
https://doi.org/10.3390/jcm14124355
Primary Topic
Congenital Heart Disease Studies
Type
article
Field-Weighted Citation Impact
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article

Beyond the Scale: The Hidden Burden of Underweight and Cachexia in Adults with Congenital Heart Defects and Heart Failure—Results from the Pathfinder CHD-Registry

Frank Harig, Anna Engel, Jürgen Hörer, Fritz Mellert et al.
Journal of Clinical Medicine
Congenital Heart Disease Studies
article

Beyond the Scale: The Hidden Burden of Underweight and Cachexia in Adults with Congenital Heart Defects and Heart Failure—Results from the Pathfinder CHD-Registry

Frank Harig, Anna Engel, Jürgen Hörer, Fritz Mellert, Michael Huntgeburth, Rhoia Clara Neidenbach, Oliver Dewald, Ann-Sophie Kaemmerer, Dennis W. Koch, Peter Ewert, Wolfgang Wagener, Frank Klawonn, Renate Kaulitz, Mathieu N. Suleiman, Wolfgang Schmiedeberg, Nicole Nagdyman, Fabian von Scheidt, Annika Freiberger, Gert Bischoff, Stefan Holdenrieder, Sebastian Freilinger, Benjamin Alexander Pittrow, Robert David Pittrow, Harald Kaemmerer, L. Pittrow, Stefan Achenbach, Elsa Ury, Nicole Wolfrum, Dirk Mentzner
article en

Abstract

<b>Background/Objectives:</b> Heart failure (HF) poses a major challenge in managing adults with congenital heart defects (ACHD). Emerging evidence suggests that HF in ACHD increases the risk of underweight due to heightened metabolic demands, gastrointestinal complications, and psychological factors such as anxiety and depression. Despite its critical implications, few studies have examined this association. This study evaluates the relationship between HF and underweight-defined as a body mass index (BMI) < 18.5-in ACHD. <b>Methods:</b> The Pathfinder-CHD Registry is a prospective, observational, web-based HF registry including ACHD with manifest HF, history of HF, or significant risk for HF. It documents congenital diagnoses, HF type, comorbidities, and treatments. Patients were categorized by BMI into mild (17.00-18.49), moderate (16.00-16.99), and severe (<16.00) underweight. <b>Results:</b> As of September 2024, the registry enrolled 1420 adults (mean age 31.8±11.3 years; 49.2% female). Underweight was present in 59 patients (4.2%): 62.7% mild, 18.6% moderate, and 18.6% severe. Among the remaining 1361 patients, 52.8% had normal weight, 32.8% were overweight, and 14.2% were obese. Women had significantly lower metabolic body weight than men (<i>p</i> = 0.002). Underweight correlated with younger age (<i>p</i> < 0.001) and CHD type (<i>p</i> = 0.02). Notably, 42.9% of underweight patients had cyanotic CHD. <b>Conclusions:</b> Underweight is an underrecognized problem in ACHD with HF. Adults with complex CHD or connective tissue disorders are disproportionately affected. Underweight should be seen as an alarm sign requiring personalized, multidisciplinary management, including nutritional support, tailored therapy, and close monitoring to improve outcomes.

Journal of Clinical MedicineVol. 14(12)
University of Vienna (AT), Friedrich-Alexander-Universität Erlangen-Nürnberg (DE), Universitätsklinikum Erlangen (DE), Universitätsklinikum Tübingen (DE), Krankenhaus Barmherzige Brüder (DE), Helmholtz Centre for Infection Research (DE), Deutsches Herzzentrum München (DE), Deutsche Rentenversicherung Bund (DE), Technical University of Munich (DE), Ludwig-Maximilians-Universität München (DE)
Deutsche Rentenversicherung, Deutsche Herzstiftung
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Congenital Heart Disease Studies
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