An international patient-centred study of retroperitoneal fibrosis
| Autor: | El Wardany G, Mason Jc, Morgan P, Tomlinson J A P, Dattani R, Pusey Cd, Gibbons N, Barwick Td, Tam Fwk |
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| Přispěvatelé: | Imperial College Healthcare NHS Trust- BRC Funding |
| Rok vydání: | 2020 |
| Předmět: |
medicine.medical_specialty
Biopsy MEDLINE Computer-assisted web interviewing Retroperitoneal fibrosis 03 medical and health sciences 0302 clinical medicine Rare Diseases General & Internal Medicine medicine Humans 030212 general & internal medicine Registries 11 Medical and Health Sciences Therapy related business.industry Retroperitoneal Fibrosis General Medicine Chronic disorders 030228 respiratory system Family medicine medicine.symptom business Psychosocial Patient centred Rare disease |
| Zdroj: | QJM : monthly journal of the Association of Physicians. 115(3) |
| ISSN: | 1460-2393 |
| Popis: | Summary Background The impact that rare chronic disorders, such as retroperitoneal fibrosis (RPF), can have on the physical and psychological aspects of a patient’s health is poorly understood. Patient-related outcome measures and experiences provide a unique opportunity to understand the impact rare chronic disorders have on a patient’s life as well as allowing healthcare providers to compare and improve performance. Aim To understand the physical and psychosocial impact that RPF has upon peoples’ lives. Design An international online questionnaire was therefore created to gain insights into how patients with RPF, a rare fibro-inflammatory condition, viewed their health and experiences. Methods An international online questionnaire comprising 62 questions/free text options, was designed in collaboration with two patient advocates and the multi-disciplinary Renal Association Rare Disease Registry (RaDaR) RPF Group the questionnaire was anonymous and freely accessible on a GOOGLE Form online platform for 6 months. Results A total of 229 patients from 30 countries across 5 continents responded. Four key issues were identified; (i) pain; (ii) therapy-related side effects; (iii) lack of informed doctors/information about their condition and its management; and (iv) psychological burden. Variations in diagnosis and management are highlighted with 55% undergoing a biopsy to reach a diagnosis of RPF; 75% of patients underwent a further interventional procedure with 60% concurrently treated medically. Conclusion This study will guide further development of clinical and academic multi-disciplinary activity and shows the importance of trying to understand the impact of rare chronic disorders on the physical and psychological aspects of a patient’s health. |
| Databáze: | OpenAIRE |
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