ArticleOrphanet journal of rare diseases2020
Education and information needs for physicians about rare diseases in Spain.
Article in Orphanet journal of rare diseases, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 58 papers.
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58 citing papers in PubMed, 111 citations in OpenAlex.
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- Achalasia: Physician Practices and Knowledge in Türkiye.The Turkish journal of gastroenterology : the official journal of Turkish Society of Gastroenterology · 2026Article
- Predictors of quality of life in parents of children with rare diseases: a tertiary care center cross-sectional study in Saudi Arabia.Frontiers in public health · 2026Article
- Awareness of Duchenne muscular dystrophy among medical staff in China: a multicenter cross-sectional survey.Frontiers in pediatrics · 2026Article
- Rare diseases in children-Knowledge, experiences and challenges faced by pediatricians in Tanzania.PLOS global public health · 2026Article
- Lived Experiences of Patients With Rare Diseases and Healthcare System Barriers: A Phenomenological Study.Journal of nursing management · 2026Article
- "We are ambassadors, we are advocates": rare disease patient advocacy groups as knowledge brokers across health and social systems-a qualitative study from Poland.Frontiers in public health · 2026Article
- Development on the Proficiency of Diagnosis and Clinical Care for Rare Diseases in Young Physicians in China.Health care science · 2025Article
- Enhancing Rare Disease Awareness and Education Among Medical Professionals and Students in Türkiye.Journal of evaluation in clinical practice · 2025Article
- Evidence of inequities experienced by the rare disease community with respect to receipt of a diagnosis and access to services: a scoping review of UK and international evidence.Orphanet journal of rare diseases · 2025Article
- Caregivers' experiences and challenges of the diagnostic odyssey in Dravet syndrome.Orphanet journal of rare diseases · 2025Article
- Effects of continuing medical education on emergency trainees' rare disease knowledge and attitude: a single-center study.BMC medical education · 2025Article
- Enhancing rare cancer care in developing countries through patient advocacy: insights from the Desmoid Tumor Brazilian Association.Therapeutic advances in medical oncology · 2025Article
- (Not) "just your nature". Diagnostic journeys of adults with neurofibromatosis type 1 in Poland.Frontiers in genetics · 2025Article
- Uncertainties of healthcare professionals and informal caregivers in rare diseases: A systematic review.Heliyon · 2024Article
- Osteogenesis Imperfecta: A study of the patient journey in 13 European countries.Orphanet journal of rare diseases · 2024Article
- Burden of rare genetic disorders in India: twenty-two years' experience of a tertiary centre.Orphanet journal of rare diseases · 2024Article
- Embracing the unknown: investigating medical communication around uncertainty and the implications on patient and family well-being.Orphanet journal of rare diseases · 2024Article
Corrections and comments
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Authors and funding
6 authors at 2 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundRare diseases are a priority objective for public health systems. Given its complexity, late and misdiagnoses occur very often which causes mental and physical burden for patients and family. This would be caused, in part, for unprepared clinicians in this field. The aim of this study was to report the training needs and the perceived shortcomings of Spanish physicians of the public health system in the diagnosis, treatment and monitoring of patients with rare diseases.
methodsWe used a descriptive cross-sectional study through an "ad hoc" survey of 26 questions was completed by 132 primary care physicians and 37 specialists during April and May 2018.
resultsLess than a third of the physicians had received training in rare disease during their undergraduate or postgraduate years, and for hospital professionals, they received more training in the postgraduate period.
conclusionPrimary care physicians and specialists showed low training level in rare diseases. An academical and continuous program on rare disease, as well as, multidisciplinary units and high quality practice guidelines are necessary to help to prevention and support clinical decisions and improve quality of care of patients and families.
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