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IMPACT study: measuring the impact of caregiving on families and healthcare professionals of children and adults living with mucopolysaccharidoses in Ireland

INTRODUCTION: Disease trajectories are often uncertain among individuals living with mucopolysaccharidoses (MPS) due to the progressive nature of the illness and the goal of care. This study investigated the impact on caregivers and care providers of children and adults living with MPS. METHODS: The...

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Detalles Bibliográficos
Autores principales: Somanadhan, Suja, Bristow, Hannah, Crushell, Ellen, Pastores, Gregory, Nicholson, Emma, Kroll, Thilo, Larkin, Philip J., Brinkley, Aoife
Formato: Online Artículo Texto
Lenguaje:English
Publicado: SAGE Publications 2021
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10032429/
https://www.ncbi.nlm.nih.gov/pubmed/37181103
http://dx.doi.org/10.1177/26330040211020764