ArticleOrphanet journal of rare diseases2023
Psychological distress of adult patients consulting a center for rare and undiagnosed diseases: a cross-sectional study.
Article in Orphanet journal of rare diseases, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 15 papers, 2 of them syntheses that pooled it.
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Who cites it
15 citing papers in PubMed, 2 syntheses or guidelines pooled it, 18 citations in OpenAlex.
- Health-related quality of life and patterns of psychological vulnerability in autoimmune Addison's disease: a systematic review.Frontiers in endocrinology · 2026Pooled it
- Measurement Properties of the Patient Health Questionnaire-15 and Somatic Symptom Scale-8: A Systematic Review and Meta-Analysis.JAMA network open · 2024Pooled it
- Trial
- Cold Hands, Warm Heart: Quality of life, wellbeing, and mental health in Raynaud's disease - An international survey study.Journal of health psychology · 2026Article
- Prevalence of depressive and anxiety symptoms among patients consulting a rare disease outpatient clinic for rare and undiagnosed diseases in China.Orphanet journal of rare diseases · 2026Article
- Patient-reported disease burden and health care utilization of HAE-nl-C1INH: insights from a real-world survey.Clinical and experimental medicine · 2026Article
- A decision tree-based algorithm for structured risk stratification of rare rheumatic diseases in a tertiary referral setting.Frontiers in medicine · 2026Article
- Predictor and subgroup analysis of somatic symptoms and emotional exhaustion among university students in Germany during the SARS-CoV-2 pandemic: a longitudinal analysis.Frontiers in public health · 2026Article
- Descriptive epidemiology demonstrating the All of Us database as a versatile resource for the rare and undiagnosed disease community.Journal of the American Medical Informatics Association : JAMIA · 2025Article
- Factors Associated With Depression and Anxiety in People With Rare Diseases During COVID-19: A Cross-Sectional Study.Depression and anxiety · 2025Article
- Nature-based interventions for individuals with rare skeletal disorders: evaluation of a 5-day sailing program on health-related quality of life.Scientific reports · 2024Article
- Psychosocial Outcomes of Pain and Pain Management in Adults with Osteogenesis Imperfecta: A Qualitative Study.Journal of clinical psychology in medical settings · 2024Article
- Health-related quality of life and associated risk factors in patients with Multiple Osteochondromas: a cross-sectional study.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2024Observational
- Embracing the unknown: investigating medical communication around uncertainty and the implications on patient and family well-being.Orphanet journal of rare diseases · 2024Article
- Reliability and Validity of the Korean Version of the Somatic Symptom Disorder-B Criteria Scale in a Clinical Population.Psychiatry investigation · 2024Article
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Authors and funding
8 authors at 1 institution in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundCenters for rare diseases serve as contact points for patients with complex, often undiagnosed complaints and persistent somatic symptoms of heterogeneous origin. Little is known about psychological distress of patients consulting these centers.
objectivesTo better understand psychological distress of adult patients presenting at a center for rare diseases by determining the proportion of patients screening positive for depressive, anxiety, and somatic symptom disorders (SSD) and to identify factors associated with increased psychopathology.
methodsCross-sectional data from the routine care registry of the Martin Zeitz Center for Rare Diseases (MZCSE) at the University Medical Center Hamburg-Eppendorf in Germany was retrieved and analyzed. We included all adult patients presenting between October 01,2020 and September 30,2021, who gave written informed consent. MEASURES: Sociodemographic variables, medical history and healthcare utilization, as well as validated measures to screen for a depressive disorder (PHQ-8), an anxiety disorder (GAD-7), and SSD (PHQ-15, SSD-12).
resultsN = 167 patients were included (age 44.5 ± 14.3 years, 64.7% female). A total of 40.7% of the patients screened positive for a depressive disorder (PHQ-8 ≥ 10), 27.5% for an anxiety disorder (GAD-7 ≥ 10) and 45.0% screened positive for SSD (PHQ-15 ≥ 9 & SSD-12 ≥ 23). Factors associated with increased psychopathology included the number of symptoms, the number of different specialties consulted before and past psychotherapy.
conclusionsPatients presenting at centers for rare diseases are likely to experience high rates of psychological distress. Systematically screening patients with rare and undiagnosed diseases for mental disorders can help to detect those at risk at an early stage and initiate adequate psychological care.
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