'Our international study...identified the majority of participants with CP to have poor sleep quality, unhealthy diets, increased sedentary behaviour, and poor endurance...'
Dr. Jan Willem Gorter and Dr. Patrick McPhee, along with an international team of clinicians and researchers, received funding through a Pedal-with-Pete grant from the American Academy for Cerebral Palsy and Developmental Medicine (AACPDM) to develop and test a core outcome set of measures to understand and prevent multimorbidity risk in adolescents and adults with CP. The project was funded in 2017 and consisted of three aims:
- to identify what outcomes should be measured to understand multimorbidity risk;
- to determine how to best measure those outcomes; and
- to measure these outcomes in an international cohort of adolescents and adults with CP.
Data collection for this study finished in 2020 and knowledge translation and other dissemination activities are ongoing.
Dr. McPhee measuring blood pressure on a study participant as one of the core outcome measures in this project.
The research team enjoying a lunch break between our first meetings for this project.
Based on the three aims of this project, we have identified the following key findings:
- Our study team synthesized the literature and through a consensus procedure with expert clinicians and researchers, identified nine outcome measurement instruments (OMIs) to measure risk factors for cardiometabolic disease and multimorbidity in adolescents and adults with CP.
- 83 adolescents and adults with CP and their parents or caregivers rated physical behaviour, nutrition, sleep and endurance to be very important to have measured and to discuss with their doctor.
- Our international study using the core outcome set of OMIs identified the majority of participants (n=67) with CP to have poor sleep quality, unhealthy diets, increased sedentary behaviour, and poor endurance. However, individuals with CP valued these health outcomes as most important to measure, suggesting a need to assess and improve these modifiable behaviours in this population.