Summary: Development and Initial Validation of the PedsQL - SCI Module.
Data: Health-related quality of life (HRQOL) measures an individual's perceptions of the impact of their disease or disability and associated treatments on a variety of dimensions, including physical, mental, social, and academic domains. Measuring HRQOL in the pediatric population must take into account the tremendous changes in all spheres of life (physical, physiological, and psychosocial) as well as the various developmental changes throughout the different stages of childhood and adolescence.
For example, HRQOL in younger children may primarily focus on physical activities, whereas social roles and independence may be more appropriate for adolescents. In addition, measurement of HRQOL should be tailored to emerging adults (young adults aged 19 to 25) who are making the tumultuous transition from adolescence into adulthood. There are no reliable and valid measures of HRQOL for youth and emerging adults with pediatric-onset spinal cord injury (SCI).
Therefore, we aim to develop and validate the PedsQL- SCI Module for youth and emerging adults with SCI in order to monitor and to ultimately increase their HRQOL. A SCI-specific HRQOL measure is needed to address unique features of youth and emerging adults with SCI, providing greater relevance to patients and their caregivers, and with the ability to detect small, but clinically meaningful changes. We propose to develop the PedsQL-SCI Module which will be feasible, relevant, valid, and measure HRQOL longitudinally throughout childhood, adolescence and emerging adulthood. In addition to self-report in the following age groups: 5-7, 8-12, 13-18, and 19-25, proxy report from caregivers will be obtained for all of those age groups plus those 2-4 years. The purpose of this presentation will describe the process of developing the PedsQL-SCI Module.