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...

hrp0092p1-235 | Growth and Syndromes (to include Turner Syndrome) (1) | ESPE2019

Development of a Measure for the Impacts of Achondroplasia on Children's Daily Functioning and Well-Being

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

Background: Research on the impacts of achondroplasia on children's functioning and well-being is limited. The purpose of the study was to investigate the impacts of achondroplasia on children's daily lives to support the development of an impact measure of achondroplasia on children's functioning and well-being.Methods: Individual telephone interviews and one parent focus group were conducted in the United S...