Depression and anxiety in patients with different rare chronic diseases: A cross-sectional study.
Open accessAbstract
OBJECTIVE: Empirical evidence on depression and anxiety in patients with rare diseases is scarce but can help improve comprehensive treatment. The objectives of this study were to investigate the frequency of depression and anxiety in this heterogeneous population and to examine aspects associated with increased psychopathology. METHODS: N = 300 patients with 79 different rare diseases (female:80%, age:M = 44.3(12.8), range:16-74 years) participated in a cross-sectional online study. We determined the percentages of patients reporting elevated depression (PHQ-9) and anxiety (GAD-7) scores. We calculated two linear regressions with depression and anxiety as outcomes. Predictor variables were diagnosis-related aspects (diagnosis assigned to ICD-10 chapter, visibility of symptoms, time since diagnosis, comorbid diseases), perceived somatic-symptom-severity (PHQ-15), illness-perceptions (consequences, control, identity, concern, understanding and treatment control; B-IPQ-R), coping mechanisms (constructive attitudes, active engagement in life) and social support (heiQ). We controlled for gender, age and depression or anxiety depending on the outcome. RESULTS: 42% of the patients (95%CI [36.41%,47.59%]) reported depression scores indicating moderately or severely elevated symptom levels. Regarding anxiety, this applies to 23% (95%CI [18.54%,28.06%]). Variables significantly associated with depression were higher perceived somatic-symptom-severity (B = 0.41,p < .001), less control (B = .17,p < .05), lower levels of concern (B = -0.32,p < .01) and less constructive attitudes (B = -1.40,p < .001). No diagnosis-related variables were associated with depression. Variables significantly associated with anxiety were diseases of the circulatory system compared to congenital malformations (B = 1.88,p < .05), less consequences (B = -0.32,p < .05) and more concern (B = -0.32,p < .01). CONCLUSION: The data reveal first insights into depression and anxiety in patients with different rare diseases. High percentages of patients showed clinically relevant symptom burden. No diagnosis-related differences were found in depression while anxiety seems to be particularly frequent in patients with rare diseases of the circulatory system. Besides perceived somatic symptom severity, cognitive appraisal seems to be linked to depression. Supporting patients in coping with their disease may help reduce psychopathology and therefore improve overall health.
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Youths with chronic medical conditions represent a high-risk group for comorbid anxiety, depression, or behavioral problems, with a reported prevalence of 10% to 42%.
“Youths with chronic medical conditions (CMCs) represent a high-risk group for comorbid anxiety, depression, or behavioral problems, with a reported prevalence of 10% to 42%.1,2,3,4,5,6”
From Efficacy of Motivational Interviewing to Improve Utilization of Mental Health Services Among Youths With Chronic Medical Conditions: A Cluster Randomized Clinical Trial (2021) · cites this paper as [1]
The Results (Symptoms of depression and anxiety; no page provided) report elevated depression symptoms in 42% of participants and anxiety symptoms in 23%, supporting part of the claim. But the sample had a mean age of 44.3 years (Results, Preliminary analyses), and the paper does not establish a 10%–42% prevalence range or assess behavioral problems in youths. (LLM, conf=0.88)
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- Authors
- Uhlenbusch, N., Löwe, B., Härter, M., Schramm, C., Weiler-Normann, C., & Depping, M. K.
- Affiliations
- University Medical Center Hamburg-Eppendorf (DE)
- Corresponding author
- Uhlenbusch, Natalie
- Venue
- PLoS ONE
- Publisher
- Public Library of Science (PLoS)
- Published
- 2019-02-20
- Volume
- 14
- Issue
- 2
- Pages
- e0211343
- ISSN
- 1932-6203 (ISSN-L)
- PMC
- PMC6382125
- OpenAlex
- W2915720434
- Cited by
- 111
- References
- 48
- Citations by year
- 2026: 5 · 2025: 17 · 2024: 24 · 2023: 20 · 2022: 10 · 2021: 18 · 2020: 11 · 2019: 6
- FWCI
- 14.14
- Type
- journal article
- Language
- en
- Open access
- gold
- doi.org
- Licence
- Locations
- PLoS ONE (publishedVersion, cc-by)
- Europe PMC (PubMed Central) (publishedVersion, cc-by)
- PubMed Central (publishedVersion, cc-by)
- PubMed (publishedVersion)
- RePEc: Research Papers in Economics (submittedVersion)
- DOAJ (DOAJ: Directory of Open Access Journals) (submittedVersion, cc-by-sa)
- Funders
- Robert Bosch Stiftung
- Topics
- Social Sciences › Psychology › Social Psychology › Mental Health Treatment and Access
- Social Sciences › Psychology › Experimental and Cognitive Psychology › Anxiety, Depression, Psychometrics, Treatment, Cognitive Processes
- Health Sciences › Medicine › Psychiatry and Mental health › Psychosomatic Disorders and Their Treatments
- Keywords
- depression, anxiety, rare diseases, chronic disease, psychopathology, illness perception, coping strategies, social support, somatic symptom severity, circulatory diseases, congenital malformations, comorbidities, time since diagnosis, PHQ-9, GAD-7, quality of life, patient mental health
- MeSH terms
- Adolescent, Adult, Aged, Anxiety, Chronic Disease, Cross-Sectional Studies, Depression, Female, Humans, Male, Middle Aged, Surveys and Questionnaires, Severity of Illness Index, Linear Models, Internet, Rare Diseases, Young Adult, Self Report
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