Assessing the impacts of having a child with achondroplasia on parent well-being

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Assessing the impacts of having a child with achondroplasia on parent well‑being Kathryn M. Pfeiffer1   · Meryl Brod1   · Alden Smith2   · Jill Gianettoni2 · Dorthe Viuff3 · Sho Ota2   · R. Will Charlton2  Accepted: 23 July 2020 © The Author(s) 2020

Abstract Purpose  This study’s purpose was to develop a better understanding of the experiences of parents of children with achondroplasia and to provide qualitative evidence to support the development of a patient-reported outcome (PRO) measure of parent impacts. Methods  Concept elicitation (CE) individual/focus group interviews were conducted with parents of children aged 2 to