Assessing the impact on caregivers caring for patients with rare pediatric lysosomal storage diseases: development of the Caregiver Impact Questionnaire

BACKGROUND: Capturing the impact of caring for patients with debilitating rare disease is important for understanding disease burden. We aimed to develop and validate an instrument to measure the impact on caregivers of caring for children with three lysosomal storage diseases (LSDs): metachromatic...

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Detalles Bibliográficos
Autores principales: Harrington, Magdalena, Hareendran, Asha, Skalicky, Anne, Wilson, Hilary, Clark, Marci, Mikl, Jaromir
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Springer International Publishing 2019
Materias:
Research
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6650510/
https://www.ncbi.nlm.nih.gov/pubmed/31338630
http://dx.doi.org/10.1186/s41687-019-0140-3

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