Multimorbidity risk assessment in adolescents and adults with cerebral palsy: a protocol for establishing a core outcome set for clinical research and practice

Patrick G Mcphee,Rita J G Van Den Berg-Emons,Marij E Roebroeck,Astrid C J Balemans,Joyce L Benner,Jan Willem Gorter,Edward A Hurvitz,Mark D Peterson,Wilma M A Van Der Slot,Olaf Verschuren

doi:10.1186/s13063-019-3265-z

Abstract

BackgroundEstimates of multimorbidity, defined as the presence of at least two chronic conditions, some of which attributable to modifiable behaviours, are high in adults with cerebral palsy (CP). An assessment protocol evaluating multimorbidity risk is needed in order to develop and evaluate effective interventions to optimize lifelong health in individuals with CP. The aim of this protocol paper is to describe the development of a core outcome set (COS) for assessing multimorbidity risk in adolescents and adults with CP, to be used in clinic and research.MethodsThe expert consortium will first define the target population and outcomes to be measured. Through a process of literature review and an international Delphi survey 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, a face-to-face stakeholder meeting with adolescents and adults with CP, their families/caregivers and researchers and clinicians who are experts in CP, will be organized to reach final agreement on the COS.DiscussionThis COS will guide clinicians and researchers in assessing multimorbidity risk in adolescents and adults with CP. The inclusion of experts and individuals with CP from international locations for establishing the COS lends strong support to its generalizability. Evidence of its feasibility and approval from all stakeholders will enable implementation in clinical practice, and guide future research using the COS in individuals with CP.

Highlights

Estimates of multimorbidity, defined as the presence of at least two chronic conditions, some of which attributable to modifiable behaviours, are high in adults with cerebral palsy (CP)
Children, adolescents and adults with CP engage in significantly less physical activity and more sedentary behaviour compared to typically developing peers [15,16,17,18,19]
Within the Common data elements (CDE) is a summary of core and supplemental recommendations that is highly recommended as a start-up resource for clinical research in this population

Summary

Introduction

Estimates of multimorbidity, defined as the presence of at least two chronic conditions, some of which attributable to modifiable behaviours, are high in adults with cerebral palsy (CP). An assessment protocol evaluating multimorbidity risk is needed in order to develop and evaluate effective interventions to optimize lifelong health in individuals with CP. The aim of this protocol paper is to describe the development of a core outcome set (COS) for assessing multimorbidity risk in adolescents and adults with CP, to be used in clinic and research. Lower cardiorespiratory endurance and physical activity and more sedentary behaviour are associated with risk of cardiovascular disease (i.e. coronary heart disease, cerebrovascular disease, peripheral arterial disease) and cardiometabolic disease (i.e. diabetes mellitus and obesity) in persons with CP [17, 24, 25], which may become higher later in life [26, 27]. Recent research in middle-aged adults with CP revealed high estimates of multimorbidity, which were significantly more prevalent among obese versus non-obese persons with CP [12]

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