دورية أكاديمية

Patient pathways for rare diseases in Europe: ataxia as an example

التفاصيل البيبلوغرافية
العنوان: Patient pathways for rare diseases in Europe: ataxia as an example
المؤلفون: Julie Vallortigara, Julie Greenfield, Barry Hunt, Deborah Hoffman, Carola Reinhard, Holm Graessner, Antonio Federico, Vinciane Quoidbach, Steve Morris, Paola Giunti
المصدر: Orphanet Journal of Rare Diseases, Vol 18, Iss 1, Pp 1-10 (2023)
بيانات النشر: BMC, 2023.
سنة النشر: 2023
المجموعة: LCC:Medicine
مصطلحات موضوعية: Ataxia, Specialist centre, Care pathway, Patient survey, Rare diseases, Medicine
الوصف: Abstract Background Progressive ataxias are rare and complex neurological disorders that represent a challenge for the clinicians to diagnose and manage them. This study explored the patient pathways of individuals attending specialist ataxia centres (SAC) compared with non–specialist settings. We investigated specifically how diagnosis was reached, the access to healthcare services, treatments, and care satisfaction. The focus of this study was on early intervention, coordination of treatment to understand the care provision in different countries. Methods A patient survey was done in the UK, Germany and Italy to gather information about diagnosis and management of the ataxias in specialist (SAC) and non-specialist settings, utilisation of other primary and secondary health care services, and patients’ satisfaction of received treatment. Results Patients gave positive feedback about the role of SAC in understanding their condition, ways to manage their ataxia (p
نوع الوثيقة: article
وصف الملف: electronic resource
اللغة: English
تدمد: 1750-1172
العلاقة: https://doaj.org/toc/1750-1172Test
DOI: 10.1186/s13023-023-02907-y
الوصول الحر: https://doaj.org/article/e065d538ca3d4f04a022a5f8a436d69dTest
رقم الانضمام: edsdoj.065d538ca3d4f04a022a5f8a436d69d
قاعدة البيانات: Directory of Open Access Journals
الوصف
تدمد:17501172
DOI:10.1186/s13023-023-02907-y