hrp0092p1-84 | Growth and Syndromes (to include Turner Syndrome) | ESPE2019

Development of a Parent Experience Measure for Parents of Children with Achondroplasia

Pfeiffer Kathyrn M. , Brod Meryl , Viuff Dorthe , Ota Sho , Gianettoni Jill , Leff Jonathan

Background: Limited research exists on how having a child with achondroplasia impacts parents' daily lives and well-being. The purpose of the study was to gather qualitative evidence to support the development of a parent experience measure that assess the impacts of having a child aged 2 to <12 years with achondroplasia.Methods: Concept elicitation interviews via individual telephone calls and an in-person focus...