ArticleInternational journal of environmental research and public health2022
Screening of Patient Impairments in an Outpatient Clinic for Suspected Rare Diseases-A Cross-Sectional Study.
Article in International journal of environmental research and public health, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 5 papers.
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Who cites it
5 citing papers in PubMed.
- Feasibility and safety of sailing based rehabilitation for rare skeletal disorders using wearable sensors and patient reported outcomes.Scientific reports · 2025Trial
- Smith-Lemli-Opitz Syndrome (SLOS)-Case Description and the Impact of Therapeutic Interventions on Psychomotor Development.Journal of clinical medicine · 2025Article
- Exploring Recent Developments in the Manifestation, Diagnosis, and Treatment of Patients with Smith-Lemli-Opitz Syndrome: From Molecular Pathways to Clinical Innovations.International journal of molecular sciences · 2025Review
- Qualitative analysis of pain impact in adult patients with X-linked hypophosphatemia.JBMR plus · 2025Article
- Pain Care Management in Rare Diseases.Healthcare (Basel, Switzerland) · 2023Article
Corrections and comments
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Authors and funding
5 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundMost rare diseases are chronic conditions with variable impairment of functionality, which can result in a need for rehabilitation. To our knowledge, there are no systematic studies on the rehabilitation needs of patients in centres for rare diseases in the literature. Our hypothesis is that participation of these patients is so limited that there is an increased need for rehabilitation. For this reason, a survey on the need for rehabilitation was carried out in all patients presenting to the centre for rare diseases, in order to assess the need for rehabilitative measures to counteract disturbances in activity and participation.
methodsA cross-sectional study was performed to collect data using a written questionnaire from December 2020 to June 2021, including patients presenting personally in the center for rare diseases.
resultsNearly 70% of the participants assessed their own ability to work as critical. Of those surveyed,
conclusionThe results show functional restrictions in the areas of mental well-being and activity. As expected, the health-related quality of life is reduced as compared to healthy people. Almost half of the participants reported significant pain-related impairments, however, only 9% of all respondents stated that they had received appropriate pain therapy. The results show the need for rehabilitation-specific skills in the care and counseling of patients with rare diseases.
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