[Need for primary care training in rare diseases]
Alfredo Avellaneda Fernández1, Maravillas Izquierdo Martínez, Santiago Luengo Gómez
1Instituto de Investigación de Enfermedades Raras, Instituto de Salud Carlos III, Madrid, Spain. alfavel@isciii.es
Atencion Primaria
|December 19, 2006
Summary
Primary care professionals have limited knowledge of rare diseases (RD) and do not see a need for further training. They prefer using online resources like SIERE for information to improve patient referral.
Area of Science:
- Medical Education
- Public Health
- Rare Diseases
Context:
- Primary care (PC) physicians require training in rare diseases (RD).
- Qualitative study exploring perceptions of RD training in PC.
- Research conducted in the Community of Madrid, Spain.
Purpose:
- To define the relevance of PC training in RD.
- To identify the need for RD training in PC.
- To explore professional and personal views on RD training.
Summary:
- RD concept is poorly understood, lacking perceived magnitude and severity.
- Little professional interest in RD, though human interest is present.
- Professionals deem undergraduate training adequate, rejecting postgraduate RD training.
Impact:
- Professionals prefer active online information seeking (e.g., SIERE).
- Internet resources are crucial for optimizing patient referral criteria.
- Current information systems can meet PC demands for RD data.
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