TY  - JOUR
AU  - Tejada-Ortigosa, Eva Maria
AU  - Flores-Rojas, Katherine
AU  - Moreno-Quintana, Laura
AU  - Muñoz-Villanueva, Maria Carmen
AU  - Perez-Navero, Juan Luis
AU  - Gil-Campos, Mercedes
PY  - 2018
DO  - 10.1016/j.anpedi.2018.03.003
UR  - http://hdl.handle.net/10668/12525
T2  - Anales de pediatria
AB  - Rare diseases are a challenge for public health due to the lack of information on their magnitude. These include inborn errors of metabolism. The objective of this study was to assess the quality of life and social, health, economic, and educational...
AB  - Introducción: Las enfermedades raras suponen un reto para la salud pública debido a la escasa información sobre su magnitud. Entre ellas destacan los errores congénitos del metabolismo. El presente estudio pretende valorar la calidad de vida y las...
LA  - es
PB  - Elsevier
KW  - Apoyo familiar
KW  - Apoyo social
KW  - Calidad de vida
KW  - Children
KW  - Enfermedades raras
KW  - Errores innatos del metabolismo
KW  - Family support
KW  - Health system
KW  - Inborn errors of metabolism
KW  - Niños
KW  - Padres
KW  - Parents
KW  - Quality of life
KW  - Rare diseases
KW  - Sistema sanitario
KW  - Social support
KW  - Caregivers
KW  - Child
KW  - Cross-sectional studies
KW  - Family health
KW  - Health education
KW  - Humans
KW  - Metabolic diseases
KW  - Needs assessment
KW  - Qualitative research
KW  - Quality of life
KW  - Rare diseases
KW  - Self report
KW  - Socioeconomic factors
KW  - Tertiary care centers
TI  - Necesidades sanitarias y socioeducativas de niños con enfermedades raras de tipo metabólico y sus familias: estudio cualitativo en un hospital de tercer nivel.
T2  - [Health and socio-educational needs of the families and children with rare metabolic diseases: Qualitative study in a tertiary hospital].
TY  - Research article
VL  - 90
ER  -