Patient participation in the development of a clinical guideline for inherited retinal dystrophies
| Autor: | Pedro Serrano-Aguilar, A. M. de Pascual y Medina, T. del Pino-Sedeño, María M. Trujillo-Martín, Lilisbeth Perestelo-Pérez, A. Pérez de la Rosa, M. Posada de la Paz, A. Toledo-Chávarri, A. Sarría Santamera |
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| Rok vydání: | 2016 |
| Předmět: |
medicine.medical_specialty
Visual acuity business.industry 030503 health policy & services Health Policy media_common.quotation_subject Delphi method Empathy Disease Guideline 03 medical and health sciences 0302 clinical medicine Family medicine Health care 030221 ophthalmology & optometry Medicine Pharmacology (medical) medicine.symptom Disease management (health) Patient participation 0305 other medical science business Psychiatry Pharmacology Toxicology and Pharmaceutics (miscellaneous) media_common |
| Zdroj: | Expert Opinion on Orphan Drugs. 4:691-697 |
| ISSN: | 2167-8707 |
| DOI: | 10.1080/21678707.2016.1182907 |
| Popis: | Objective: To identify the most relevant self-perceived health problems and unmet needs among adults with inherited retinal dystrophies (IRDs) in order to incorporate patients’ perspective from the initial design of a clinical practice guideline (CPG) for IRDs in Spain.Research design and methods: A systematic review (SR) and a survey according to the Delphi method were carried out.Main Outcome Measures: Self-perceived health problems, unmet needs of care and treatment expectations related to IRDs.Results: From the SR, no information was found regarding unmet health care needs or dissatisfaction with health care services. In the survey, the most significant self-reported health problems were progressive decrease in visual acuity, visual field loss, abnormal sensitivity to light or glare, and night blindness. The main unmet needs were scarcity of disease information, lack of protocols for effective disease management and limited professional empathy. Treatment expectations were focused on the avail... |
| Databáze: | OpenAIRE |
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