Mental disorders in people with undiagnosed diseases presenting to German centres for rare diseases – prevalence, type and relevance

People presenting to centres for rare diseases (CRD) for diagnostic work-up often suffer from mental disorders. The prevalence and distribution of these mental disorders and their relevance for care remain largely unclear and well-controlled multicentre studies are missing. The ZSE-DUO study was a multicentre, prospective, controlled cohort study involving 11 German CRD. In total, 662 adult patients with an unclear diagnosis were evaluated by an additional mental health specialist along with their usual CRD care. Mental disorders were assessed through a standardized clinical examination, including the Mini-DIPS interview. Prevalence of diagnosed mental disorders (ICD-10 coding) was assessed and compared to population prevalence. A total of 54.5 % (361 patients) of adults with unexplained symptoms presenting to a CRD had current mental disorders. Mental disorders were deemed the sole explanation for the entire symptomatology in 53.5 % of cases. In 36.2 % of cases, a combination of a mental disorder with a somatic disease was considered to explain the unexplained symptoms. In 8.3 % of cases, it was assessed that the mental disorder was not involved in explaining the unexplained symptoms. Assessing whether a mental disorder contributes to the patient's symptom complex is crucial for determining suitable treatment strategies in terms of a bio-psycho-social approach.

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Publication Details

Journal
Psychiatry Research
Published
2025-04-19
DOI
https://doi.org/10.1016/j.psychres.2025.116509
Primary Topic
Mental Health Treatment and Access
Type
article
Field-Weighted Citation Impact
0.00
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article

Mental disorders in people with undiagnosed diseases presenting to German centres for rare diseases – prevalence, type and relevance

Helge Hebestreit, Frank Rutsch, Matthias Vogel, Martina de Zwaan et al.
Psychiatry Research
Mental Health Treatment and Access
article

Mental disorders in people with undiagnosed diseases presenting to German centres for rare diseases – prevalence, type and relevance

Helge Hebestreit, Frank Rutsch, Matthias Vogel, Martina de Zwaan, Jörg B. Schulz, Christopher Schippers, Lisa Pfister, Tim Maisch, Mariel Nöhre, Christian Krauth, Stephan Zipfel, Jürgen Deckert, Alexandra Berger, Lilly Brandstetter, Katharina Schubert, Kirsten Haas, Lavinia Bârlescu, Stephan Herpertz, Stefanie Witt, Harald Gündel, Moritz de Greck, Isabel Heinrich, Jan Dieris-Hirche, Christine Mundlos, Kevin Koschitzki, Julian Hett, Anne Herrmann‐Werner, Thomas Lücke, Gereon Heuft, Oliver Tüscher
article en

Abstract

People presenting to centres for rare diseases (CRD) for diagnostic work-up often suffer from mental disorders. The prevalence and distribution of these mental disorders and their relevance for care remain largely unclear and well-controlled multicentre studies are missing. The ZSE-DUO study was a multicentre, prospective, controlled cohort study involving 11 German CRD. In total, 662 adult patients with an unclear diagnosis were evaluated by an additional mental health specialist along with their usual CRD care. Mental disorders were assessed through a standardized clinical examination, including the Mini-DIPS interview. Prevalence of diagnosed mental disorders (ICD-10 coding) was assessed and compared to population prevalence. A total of 54.5 % (361 patients) of adults with unexplained symptoms presenting to a CRD had current mental disorders. Mental disorders were deemed the sole explanation for the entire symptomatology in 53.5 % of cases. In 36.2 % of cases, a combination of a mental disorder with a somatic disease was considered to explain the unexplained symptoms. In 8.3 % of cases, it was assessed that the mental disorder was not involved in explaining the unexplained symptoms. Assessing whether a mental disorder contributes to the patient's symptom complex is crucial for determining suitable treatment strategies in terms of a bio-psycho-social approach.

Psychiatry ResearchVol. 349
Goethe University Frankfurt (DE), Universität Hamburg (DE), Universität Ulm (DE), Johannes Gutenberg University Mainz (DE), University Hospitals of the Ruhr-University of Bochum (DE), University Hospital Regensburg (DE), Medizinische Hochschule Hannover (DE), University Medical Center of the Johannes Gutenberg University Mainz (DE), Zimmer Biomet (Germany) (DE), University Hospital Münster (DE), University Medical Center Hamburg-Eppendorf (DE), Universitätsklinikum Aachen (DE), Universitätsklinikum Würzburg (DE), University Hospital Frankfurt (DE), DRK Kliniken Berlin (DE), University Hospital Magdeburg (DE), LWL-Universitätsklinikum Bochum (DE), University Hospital Ulm (DE), Technische Hochschule Ulm (DE), University of Tübingen (DE), RWTH Aachen University (DE), Ruhr University Bochum (DE), Otto-von-Guericke-Universität Magdeburg (DE)
Openalex Percentile: Top 91%
Mental Health Treatment and Access
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