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Screening of Patient Impairments in an Outpatient Clinic for Suspected Rare Diseases-A Cross-Sectional Study.
Gutenbrunner, Christoph; Schiller, Joerg; Goedecke, Vega; Lemhoefer, Christina; Boekel, Andrea.
Afiliación
  • Gutenbrunner C; Department of Rehabilitation Medicine, Hannover Medical School, 30625 Hannover, Germany.
  • Schiller J; Department of Rehabilitation Medicine, Hannover Medical School, 30625 Hannover, Germany.
  • Goedecke V; Clinic for Nephrology, Hannover Medical School, 30625 Hannover, Germany.
  • Lemhoefer C; Centre for Rare Diseases, Hannover Medical School, 30625 Hannover, Germany.
  • Boekel A; Jena University Hospital, 07743 Jena, Germany.
Int J Environ Res Public Health ; 19(14)2022 07 21.
Article en En | MEDLINE | ID: mdl-35886725
BACKGROUND: Most 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. METHODS: A 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. RESULTS: Nearly 70% of the participants assessed their own ability to work as critical. Of those surveyed, n = 30 (44.9%) had PDI total ≥ 33 points and, thus, a clear pain-related impairment. CONCLUSION: The 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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Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Asunto principal: Calidad de Vida / Enfermedades Raras Tipo de estudio: Diagnostic_studies / Observational_studies / Prevalence_studies / Risk_factors_studies / Screening_studies Aspecto: Patient_preference Límite: Humans Idioma: En Revista: Int J Environ Res Public Health Año: 2022 Tipo del documento: Article País de afiliación: Alemania Pais de publicación: Suiza
Texto completo
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Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Asunto principal: Calidad de Vida / Enfermedades Raras Tipo de estudio: Diagnostic_studies / Observational_studies / Prevalence_studies / Risk_factors_studies / Screening_studies Aspecto: Patient_preference Límite: Humans Idioma: En Revista: Int J Environ Res Public Health Año: 2022 Tipo del documento: Article País de afiliación: Alemania Pais de publicación: Suiza