Development of a disease-specific quality of life questionnaire for adult patients with hereditary angioedema due to C1 inhibitor deficiency (HAE-QoL): Spanish multi-centre research project

BACKGROUND: There is a need for a disease-specific instrument for assessing health-related quality of life in adults with hereditary angioedema due to C1 inhibitor deficiency, a rare, disabling and life-threatening disease. In this paper we report the protocol for the development and validation of a...

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Detalles Bibliográficos
Autores principales: Prior, Nieves, Remor, Eduardo, Gómez-Traseira, Carmen, López-Serrano, Concepción, Cabañas, Rosario, Contreras, Javier, Campos, Ángel, Cardona, Victoria, Cimbollek, Stefan, González-Quevedo, Teresa, Guilarte, Mar, de Rojas, Dolores Hernández Fernández, Marcos, Carmen, Rubio, María, Tejedor-Alonso, Miguel Ángel, Caballero, Teresa
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2012
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3489868/
https://www.ncbi.nlm.nih.gov/pubmed/22817696
http://dx.doi.org/10.1186/1477-7525-10-82