Activity Participation in the Pediatric Skeletal Dysplasia Population

Abstract

<h3>Research Objectives</h3> To investigate activities children with skeletal dysplasia participate.To identify activities with the greatest and lowest participation rates among children with skeletal dysplasia .To investigate participation patterns among children with skeletal dysplasia. <h3>Design</h3> Children with skeletal dysplasia were asked to complete the Children's Assessment of Participation and Enjoyment (CAPE) survey during visits July 2014-June 2019. Demographic information and use of assistive devices was collected retrospectively. <h3>Setting</h3> City-based ambulatory orthopedic hospital. <h3>Participants</h3> Sixty-six children (38 females, 28 males) average age 11.5+/-4.21 years participated. Twenty-three (35%) were at least 13 years old, 43 (65%) were younger than 13. Thirty-two had average stature for age, 34 had short stature. There were 21 different skeletal dysplasia diagnoses among the participants. Fifteen children (23%) used assistive devices. Thirty-six children identified as white, 10 as black, 9 as Hispanic, 9 as Asian, 2 as other. <h3>Interventions</h3> CAPE was validated in Ontario, Canada for children (ages 6-21) with or without disabilities. <h3>Main Outcome Measures</h3> CAPE measures children participation of 55 informal and formal activities of five activity types: recreational, active-physical, social, skill-based, and self-improvement. <h3>Results</h3> Children participated in an average of 27.6+/-9.21 activities (overall diversity scores) out of 55 individual activities. CAPE diversity responses for each domain were used to compare the degree of activity involvement. Intensity and enjoyment were calculated. Chi-square analyses were conducted to analyze responses by each individual item. Paired t-tests were used to compare variation across population demographics. All statistical analysis was conducted using SPSS 22 for Windows. <h3>Conclusions</h3> Children with skeletal dysplasia participate in a wide variety of activities. Greatest participation was in social activities, lowest in physical activities. Use of assistive devices did not affect participation; there were no participation differences between genders. No study has previously evaluated the participation activities in this population. <h3>Author(s) Disclosures</h3> Dr. Cathleen Raggio received consulting fees from Alexion Pharmaceuticals, Ascendis and Biomarin. She was on speaker's bureau for Alexion Pharmaceuticals and Medical Advisory Board for Osteogenesis Imperfecta Foundation. Erin Carter on Medical Advisory Board for Little People of America, Inc.