[Perception of rare diseases by the primary care physicians]. / Percepción de las enfermedades raras por el médico de atención primaria.

OBJECTIVES: Identify the elements that lead to the perception that primary health care physicians (PHCP) have as regards rare diseases (RD) as a whole, and to analyse the characteristics of these patients with rare diseases. METHODS: Descriptive cross-sectional study. Surveys completed by PHCP during the years 2008-2010 were used to explore socio-demographic data, health care facilities, manpower, and services, knowledge level, expectations, means of obtaining available information, and training-support preferences of RD. RESULTS: A total of 260 questionnaires were analysed. The average level of knowledge was 3.68 (SD 1.93), of interest 7.34 (SD 2.02), and of importance 7.51 (SD 1.69). Less than one quarter (20.4%) of responders had done some training activity. Care at home (6.38, SD 2.07) is the most valued long term care option, emphasising the need of primary prevention (7.63 SD 1.5). Over one-third (35%) applied for some aid, mainly economic (37.4%). Internet is their main source of information (71.2%), and an average of 7.85 (SD 2.38) perceived the need for specific continuing training. By registered lists, each professional attends a mean of 2.45 (SD 3.69) patients with RD, 1.604% having temporary work disability, 1.479% having some disability and 1.62% with a dependence situation. The follow up of RD patients was: at Hospital level 55.72%, by special reference units 44.34%, by specialists 39.75%, and exclusively at PHCP level 14.46%. CONCLUSIONS: PHCP have a low level of knowledge of RD, although a high interest, with emphasis on primary prevention, the importance of the family environment, genetic counselling and health education. They rarely request medical resources for RD. Internet is their main source of information, and prefer specific continuing education courses.

Percepción de las enfermedades raras por el médico de atención primaria / Perception of rare diseases by the primary care physicians

Objetivos. Identificar los elementos que integran la percepción que tienen los médicos de atención primaria (AP) con respecto a las enfermedades raras (ER) en su conjunto y analizar las características de estos pacientes. Métodos. Estudio de corte transversal descriptivo mediante encuestas cumplimentadas por médicos de AP. Se incluyen variables sociodemográficas, sociosanitarias, grado de conocimiento, expectativas, forma de obtener información y preferencias de formación sobre ER, durante los años 2008-2010. Resultados. Se analizan 260 encuestas. El grado medio de conocimiento es de 3,68 (DE 1,93), de interés 7,34 (DE 2,02) y de importancia 7,51 (DE 1,69). El 20,4% han realizado alguna actividad formativa. La atención domiciliaria (6,38; DE 2,07) es la opción sociosanitaria más valorada; considerando más necesaria la prevención primaria (7,63; DE 1,5). El 35% solicita alguna ayuda, principalmente económica (37,4%). Internet resulta su fuente principal de información (71,2%) y una media de 7,85 (DE 2,38) percibe la necesidad de cursos de formación continuada específicos. Por cupo existen 2,45 (DE 3,69) pacientes con ER, en situación de incapacidad laboral transitoria (ILT) el 1,604%, presenta discapacidad el 1,479% y dependencia el 1,62%. Realizando seguimiento hospitalario el 55,72%, en unidades de referencia el 44,34%, por especialista de zona el 39,75% y únicamente por AP el 14,46%. Conclusiones. Existe un grado de conocimiento bajo en ER por parte del médico de AP, aunque un gran interés, priorizando la prevención primaria, la importancia del entorno familiar, el consejo genético y la educación sanitaria. El médico de AP solicita escasos recursos para las ER. Internet es su fuente principal de información y prefiere los cursos de formación continuada específicos (AU)

Objectives. Identify the elements that lead to the perception that primary health care physicians (PHCP) have as regards rare diseases (RD) as a whole, and to analyse the characteristics of these patients with rare diseases. Methods. Descriptive cross-sectional study. Surveys completed by PHCP during the years 2008-2010 were used to explore socio-demographic data, health care facilities, manpower, and services, knowledge level, expectations, means of obtaining available information, and training-support preferences of RD. Results. A total of 260 questionnaires were analysed. The average level of knowledge was 3.68 (SD 1.93), of interest 7.34 (SD 2.02), and of importance 7.51 (SD 1.69). Less than one quarter (20.4%) of responders had done some training activity. Care at home (6.38, SD 2.07) is the most valued long term care option, emphasising the need of primary prevention (7.63 SD 1.5). Over one-third (35%) applied for some aid, mainly economic (37.4%). Internet is their main source of information (71.2%), and an average of 7.85 (SD 2.38) perceived the need for specific continuing training. By registered lists, each professional attends a mean of 2.45 (SD 3.69) patients with RD, 1.604% having temporary work disability, 1.479% having some disability and 1.62% with a dependence situation. The follow up of RD patients was: at Hospital level 55.72%, by special reference units 44.34%, by specialists 39.75%, and exclusively at PHCP level 14.46%. Conclusions. PHCP have a low level of knowledge of RD, although a high interest, with emphasis on primary prevention, the importance of the family environment, genetic counselling and health education. They rarely request medical resources for RD. Internet is their main source of information, and prefer specific continuing education courses (AU)

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