Publication: Papel del farmacéutico en respuesta a las necesidades sociosanitarias de los pacientes con intolerancia hereditaria a la fructosa
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2019-11-22
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Universidad Complutense de Madrid
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Abstract
La Intolerancia Hereditaria a la Fructosa (IHF) es una enfermedad metabólica autosómica recesiva de baja prevalencia debida a una deficiencia en la actividad de la Aldolasa B, enzima encargada del metabolismo de la fructosa. Objetivos: Describir las necesidades sanitarias de los afectados y familiares con IHF relacionadas con el papel del farmacéutico y realizar acciones sobre medicamentos para facilitar la información para pacientes y profesionales sanitarios. Analizar sus necesidades y compararlas con las del Estudio sobre situación de Necesidades Sociosanitarias de las Personas con Enfermedades Raras (ER) en España (ENSERio).Material y métodos: Encuesta de evaluación de necesidades en IHF (ENSIHFE): estudio observacional prospectivo donde se difundió una encuesta anónima de evaluación de necesidades sociosanitarias, basada en el cuestionario del estudio ENSERio, a pacientes con IHF residentes en España (2016-2017). Se añadieron preguntas sobre la mejora de la situación actual, uso de medicamentos, fuentes de información y encuestas de calidad de vida relacionadas con la salud. Se realizó un muestreo no probabilístico con difusión a través de la Asociación de Afectados por IHF (AAIHF), otras asociaciones y médicos especialistas en enfermedades metabólicas...
Hereditary Fructose Intolerance (HFI) is an autosomal recessive low prevalence metabolic disease due to an Aldolase B deficiency, an enzyme responsible for the fructose metabolism.Objectives: To describe the health needs of HFI patients and family members related to the role of pharmacist and to carry out actions related to medicines to facilitate information for patients and health professionals. To analyze the socio-health needs and to compare them with needs of the ENSERio study “Socio-health needs of people with Rare Diseases (RD) in Spain”.Material and methods: Socio-health needs survey in HFI patients (ENSIHFE): prospective observational study in which an anonymous survey of socio-health needs, based on the ENSERio study questionnaire, was conducted to HFI patients living in Spain (2016-2017). Questions about the improvement of the current situation, use of medicines, information sources and health-related quality of life surveys were also added. A non-probabilistic sampling was carried out with a distribution through the Spanish Association of HFI (AAIHF), other patients associations and metabolic diseases physicians. AAIHF consultations: descriptive analysis of the AAIHF inquiries collected (2012-2016): number of users, consultations per user, person who makes the inquiry, consultation topic and means of contact...
Hereditary Fructose Intolerance (HFI) is an autosomal recessive low prevalence metabolic disease due to an Aldolase B deficiency, an enzyme responsible for the fructose metabolism.Objectives: To describe the health needs of HFI patients and family members related to the role of pharmacist and to carry out actions related to medicines to facilitate information for patients and health professionals. To analyze the socio-health needs and to compare them with needs of the ENSERio study “Socio-health needs of people with Rare Diseases (RD) in Spain”.Material and methods: Socio-health needs survey in HFI patients (ENSIHFE): prospective observational study in which an anonymous survey of socio-health needs, based on the ENSERio study questionnaire, was conducted to HFI patients living in Spain (2016-2017). Questions about the improvement of the current situation, use of medicines, information sources and health-related quality of life surveys were also added. A non-probabilistic sampling was carried out with a distribution through the Spanish Association of HFI (AAIHF), other patients associations and metabolic diseases physicians. AAIHF consultations: descriptive analysis of the AAIHF inquiries collected (2012-2016): number of users, consultations per user, person who makes the inquiry, consultation topic and means of contact...
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Tesis inédita de la Universidad Complutense de Madrid, Facultad de Farmacia, leída el 16-09-2019