Core Outcome Measures in Effectiveness Trials

Multi-morbidity risk assessment and prevention in adolescents and adults with cerebral palsy: establishing a core outcome set for clinical practice

General Information

Summary:
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.

Contributors:
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

Further Study Information

Current Stage:
Ongoing
Date:
September 2017 - January 2019
Funding source(s):
American Academy for Cerebral Palsy and Developmental Medicine, Pedal-with-Pete grant

Health Area

Disease Category
Child health
Neurology

Disease Name
Cerebral palsy

Target Population

Age Range
14 - 100

Sex
Either


Nature / type of Intervention
Unknown

Method(s)

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.


Stakeholders Involved

Clinical experts
Conference participants
Consumers (caregivers)
Consumers (patients)
Families
Researchers

Study Type

COS for clinical trials or clinical research
COS for practice
Recommended outcome measures (measurement)

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