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

Authors
  • McPhee, Patrick G.1
  • Benner, Joyce L.2
  • Balemans, Astrid C. J.3, 4
  • Verschuren, Olaf3
  • van den Berg-Emons, Rita J. G.2
  • Hurvitz, Edward A.5
  • Peterson, Mark D.5
  • van der Slot, Wilma M. A.2
  • Roebroeck, Marij E.2
  • Gorter, Jan Willem6
  • 1 McMaster University, Institute for Applied Health Sciences, School of Rehabilitation Science, 1400 Main Street West, Hamilton, ON, L8S 1C7, Canada , Hamilton (Canada)
  • 2 Erasmus University Medical Center and Rijndam Rehabilitation, Department of Rehabilitation Medicine, Rotterdam, 3000 CA, The Netherlands , Rotterdam (Netherlands)
  • 3 University Medical Center Utrecht and De Hoogstraat Rehabilitation, Brain Center Rudolf Magnus and Center of Excellence for Rehabilitation Medicine, Rembrandtkade 10, Utrecht, 3583 TM, The Netherlands , Utrecht (Netherlands)
  • 4 VU University Medical Center, Department of Rehabilitation Medicine, Amsterdam Movement Sciences, Amsterdam Public Health, Amsterdam, The Netherlands , Amsterdam (Netherlands)
  • 5 University of Michigan, Department of Physical Medicine and Rehabilitation, 325 E Eisenhower Parkway, Ann Arbor, MI, 48108, USA , Ann Arbor (United States)
  • 6 McMaster University, Institute for Applied Health Sciences, Department of Pediatrics, 1400 Main Street West, Hamilton, ON, L8S 1C7, Canada , Hamilton (Canada)
Type
Published Article
Journal
Trials
Publisher
Springer (Biomed Central Ltd.)
Publication Date
Mar 19, 2019
Volume
20
Issue
1
Identifiers
DOI: 10.1186/s13063-019-3265-z
Source
Springer Nature
Keywords
License
Green

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.

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