OBJECTIVES: The problem of the need for primary care (PC) training in rare diseases (RD) is approached through a qualitative research study that tries to define its relevance and to identify the need for RD training in PC. METHODS: By means of naturalistic research methods (in-depth interviews and group dynamics), we tried to discover the personal and professional connotations of PC training in RD in the rural and urban areas of the Community of Madrid, Spain. The areas explored by means of structured interview were: challenges and RD definition; professional experience with RD; relevance of PC for RD; training and information in RD; needs and demands for RD in PC. RESULTS: We found no differences between the rural and urban groups nor between different professional categories. The RD concept was relatively unknown and difficulties arose in understanding the magnitude and overall importance of these diseases. Nor did the RD concept express the severity or the repercussions of these diseases. RDs awoke little professional interest, in contrast with the human interest aroused. CONCLUSIONS: The professionals interviewed thought that undergraduate training was sufficient, and rejected postgraduate training as unnecessary and unfeasible. The search for active information through Internet was the best way to obtain data to optimize criteria for patient referral. As such, the Information System for Rare Diseases in Spanish (Sistema de Información de Enfermedades Raras en Español, SIERE) (http://iier.isciii.es/er) meets the demands for information.
OBJECTIVES: The problem of the need for primary care (PC) training in rare diseases (RD) is approached through a qualitative research study that tries to define its relevance and to identify the need for RD training in PC. METHODS: By means of naturalistic research methods (in-depth interviews and group dynamics), we tried to discover the personal and professional connotations of PC training in RD in the rural and urban areas of the Community of Madrid, Spain. The areas explored by means of structured interview were: challenges and RD definition; professional experience with RD; relevance of PC for RD; training and information in RD; needs and demands for RD in PC. RESULTS: We found no differences between the rural and urban groups nor between different professional categories. The RD concept was relatively unknown and difficulties arose in understanding the magnitude and overall importance of these diseases. Nor did the RD concept express the severity or the repercussions of these diseases. RDs awoke little professional interest, in contrast with the human interest aroused. CONCLUSIONS: The professionals interviewed thought that undergraduate training was sufficient, and rejected postgraduate training as unnecessary and unfeasible. The search for active information through Internet was the best way to obtain data to optimize criteria for patient referral. As such, the Information System for Rare Diseases in Spanish (Sistema de Información de Enfermedades Raras en Español, SIERE) (http://iier.isciii.es/er) meets the demands for information.
Authors: Manuel Ortega Calvo; José Luis Gómez-Chaparro Moreno; Antonio González-Meneses López; Javier Guillén Enríquez; Antonio Varo Baena; Elvira Fernández de la Mota Journal: Aten Primaria Date: 2011-06-08 Impact factor: 1.137
Authors: Nicole Boffin; Elfriede Swinnen; Johan Wens; Montse Urbina; Johan Van der Heyden; Viviane Van Casteren Journal: Int J Environ Res Public Health Date: 2018-06-05 Impact factor: 3.390
Authors: Antonio Morales-Piga; Miguel García Ribes; Pilar Arribas Álvaro; Carlos Casado Álvaro; Manuel Posada de La Paz; Javier Bachiller-Corral Journal: Aten Primaria Date: 2013-01-28 Impact factor: 1.137