Developing and Testing PEM Questionnaires as Promising PROs

Participation disparities for children with disabilities begin in early childhood. Hence, participation in activities is an important patient-reported outcome (PRO) in early intervention, early childhood special education, and pediatric rehabilitation. We have helped to develop, test, and apply the Participation and Environment Measurement (PEM) approach as a promising PRO of children’s functioning.

We helped to develop a caregiver questionnaire called the Participation and Environment Measure for Children and Youth (PEM-CY) for parents of children 5-17 years and took the lead in developing the Young Children’s Participation and Environment Measure (YC-PEM) for parents of children 0-5 years. Adaptations to YC-PEM content, scaling, and layout have been guided by conceptual mapping, parent input, secondary analysis of large datasets, and cognitive testing of the initial version with parents. To learn more about this formative work, please click here.

We then secured NIH funding (K12 HD055931; UL1 TR001082; PI: Khetani) to test and apply the YC-PEM as highlighted in a recent podcast interview.