Hebestreit, Helge and Lapstich, Anne-Marie and Brandstetter, Lilly and Krauth, Christian and Deckert, Juergen and Haas, Kirsten and Pfister, Lisa and Witt, Stefanie and Schippers, Christopher and Dieris-Hirche, Jan and Maisch, Tim and Tuescher, Oliver and Barlescu, Lavinia and Berger, Alexandra and Berneburg, Mark and Britz, Vanessa and Deibele, Anna and Graessner, Holm and Guendel, Harald and Heuft, Gereon and Luecke, Thomas and Mundlos, Christine and Quitmann, Julia and Rutsch, Frank and Schubert, Katharina and Schulz, Joerg Bernhard and Schweiger, Susann and Zeidler, Cornelia and Zeltner, Lena and de Zwaan, Martina and ZSE DUO Working Grp, (2023) Effect of the addition of a mental health specialist for evaluation of undiagnosed patients in centres for rare diseases (ZSE-DUO): a prospective, controlled trial with a two-phase cohort design. ECLINICALMEDICINE, 65: 102260. ISSN , 2589-5370
Full text not available from this repository. (Request a copy)Abstract
Background People with complex symptomatology but unclear diagnosis presenting to a centre for rare diseases (CRD) may present with mental (co-)morbidity. We hypothesised that combining an expert in somatic medicine with a mental health specialist working in tandem will improve the diagnostic outcome.Methods Patients aged 12 years and older who presented to one of the 11 participating German CRDs with an unknown diagnosis were recruited into this prospective cohort trial with a two-phase cohort design. From October 1, 2018 to September 30, 2019, participants were allocated to standard care (SC, N = 684), and from October 1, 2019 to January 31, 2021 to innovative care (IC, N = 695). The cohorts consisted mainly of adult participants with only a minority of children included (N = 67). IC included the involvement of a mental health specialist in all aspects of care (e.g., assessing medical records, clinic visits, telehealth care, and case conferences). Clinicaltrials.gov identifier: NCT03563677.Findings The proportion of patients with diagnoses established within 12 months after the first visit to the CRD explaining the entire symptomatology (primary outcome) was 19% (N = 131 of 672) in the SC and 42% (N = 286 of 686) in the IC cohort (OR adjusted for centre effects 3.45 [95% CrI: 1.99-5.65]). The difference was mainly due to a higher prevalence of mental disorders and non-rare somatic diseases in the IC cohort. The median time to explaining diagnoses was one month shorter with IC (95% CrI: 1-2), and significantly more patients could be referred to local regular care in the IC (27.5%; N = 181 of 659) compared to the SC (12.3%; N = 81 of 658) cohort (OR adjusted for centre effects 2.70 [95% CrI: 2.02-3.60]). At 12-month follow-up, patient satisfaction with care was significantly higher in the IC compared to the SC cohort, while quality of life was not different between cohorts.Interpretation Our findings suggested that including a mental health specialist in the entire evaluation process of CRDs for undiagnosed adolescents and adults should become an integral part of the assessment of individuals with a suspected rare disease.Copyright (c) 2023 The Author(s). Published by Elsevier Ltd. This is an open access article under the CC BY-NC-ND license (http://creativecommons.org/licenses/by-nc-nd/4.0/).
| Item Type: | Article |
|---|---|
| Uncontrolled Keywords: | IMPACT; CARE; Rare diseases; Diagnostic services; Mental health; Patient care team; Medically unexplained symptoms |
| Subjects: | 600 Technology > 610 Medical sciences Medicine |
| Divisions: | Medicine > Lehrstuhl für Dermatologie und Venerologie |
| Depositing User: | Dr. Gernot Deinzer |
| Date Deposited: | 30 Jan 2024 10:17 |
| Last Modified: | 30 Jan 2024 10:17 |
| URI: | https://pred.uni-regensburg.de/id/eprint/60911 |
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