ArticleBundesgesundheitsblatt, Gesundheitsforschung, Gesundheitsschutz2023
[Healthcare for people with rare diseases: recommendations for successful intersectoral collaboration].
Article in Bundesgesundheitsblatt, Gesundheitsforschung, Gesundheitsschutz, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 papers.
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Who cites it
2 citing papers in PubMed, 5 citations in OpenAlex.
- Factors Associated With Depression and Anxiety in People With Rare Diseases During COVID-19: A Cross-Sectional Study.Depression and anxiety · 2025Article
- Uncertainties of healthcare professionals and informal caregivers in rare diseases: A systematic review.Heliyon · 2024Article
Corrections and comments
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Authors and funding
6 authors at 2 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundRare diseases often present complex symptoms and usually require intersectoral collaboration during diagnostic and therapeutic processes involving inpatient and outpatient care. Hence, smooth interfaces with little loss of information and cooperation are essential to provide appropriate care. Our study, the project ESE-Best, aims at developing recommendations for the design and implementation of intersectoral care for patients with rare diseases using various survey instruments.
methodsUsing quantitative and qualitative methods, multiple perspectives (primary physicians, expert centers of rare diseases, patients, parents) were assessed. Additionally, two expert workshops were conducted.
resultsBased on findings from our data, we formulated 28 recommendations in the following areas: (1) networking between primary physicians and expert centers, (2) intersections within the expert centers, (3) awareness of rare diseases, structures of expert centers and responsibilities, (4) collaboration between expert centers and patients/caregivers, and (5) further recommendations.
conclusionOur recommendations provide a basis for a working management of intersectoral care in rare diseases. As the recommendations are based on broad data including multiple perspectives, external validity and feasibility can be assumed. Still, time and human resources as well as organizational structures in single centers or practices and regional structures need to be taken into account as they may impact intersectoral care.
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Registered trials
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