Adults with cerebral palsy (CP) have high-estimates of multi-morbidity defined as the presence of at least two chronic conditions, some of which attribute to modifiable behaviours. In order for clinicians and researchers to develop and evaluate effective interventions to optimize lifelong health in individuals with CP, an established assessment protocol evaluating multi-morbidity risk is needed. This research aims to establish a core outcome set (COS) for multi-morbidity risk in adolescents and adults with CP to be used in clinic, and to assess its feasibility on an international platform.
Protocol: https://trialsjournal.biomedcentral.com/articles/10.1186/s13063-019-3265-z
Jan Willem Gorter, MD, PhD, McMaster University. Hamilton, ON. Canada - Principal Investigator
Marij Roebroeck, PhD, Erasmus University Medical Center. Rotterdam, The Netherlands - Co-investigator
Patrick McPhee, PhD(c), MSc, McMaster University. Hamilton, ON. Canada - Co-investigator
Joyce Benner, PhD(c), MSc, Erasmus University Medical Center. Rotterdam, The Netherlands - Co-investigator
Mark Peterson, PhD, University of Michigan. Ann Arbor, MI. USA - Co-investigator
Edward Hurvitz, MD, University of Michigan, Ann Arbor, MI. USA - Co-investigator
Wilma van der Slot, MD, PhD, Erasmus University Medical Center. Rotterdam, The Netherlands - Co-investigator
Rita van den Berg-Emons, PhD, Erasmus University Medical Center. Rotterdam, The Netherlands - Co-investigator
Astrid Balemans, PhD, De Hoogstraat Rehabilitation Centre of Excellence. Utrecht, The Netherlands - Co-investigator
Olaf Verschuren, PhD, De Hoogstraat Rehabilitation Centre of Excellence. Utrecht, The Netherlands - Co-investigator
Disease Category: Child health, Neurology
Disease Name: Cerebral palsy
Age Range: 14 - 100
Sex: Either
Nature of Intervention:
- Clinical experts
- Conference participants
- Consumers (caregivers)
- Consumers (patients)
- Families
- Researchers
- COS for clinical trials or clinical research
- COS for practice
- Recommendations for outcome measures (measurement/how)
- Consensus meeting
- Delphi process
- Literature review
- Semi structured discussion
The expert consortium will first define the target population and outcomes to be measured. Through a process of literature review and an international Delphi process with expert clinicians and researchers, we will then determine which outcome measurement instruments (OMIs) can best measure those outcomes. The resulting OMIs will be used in a feasibility study with adolescents and adults with CP from an international clinical research network. Finally face-to-face stakeholder meetings with adolescents and adults with CP and their families/caregivers, and researchers and clinicians who are experts in CP, will be organized to reach final agreement on the COS.