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, Joyce L. Benner, Astrid C. J. Balemans, Olaf Verschuren, Rita J. G. van den Berg-Emons, Edward A. Hurvitz, Mark D. Peterson, Wilma M. A. van der Slot, Marij E. Roebroeck, Jan Willem Gorter

Research output: Contribution to journalArticleAcademicpeer-review

Abstract

Background: 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. Methods: The 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. Discussion: This 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.
Original languageEnglish
Article number176
JournalTrials
Volume20
Issue number1
DOIs
Publication statusPublished - 2019

Cite this

McPhee, Patrick G. ; Benner, Joyce L. ; Balemans, Astrid C. J. ; Verschuren, Olaf ; van den Berg-Emons, Rita J. G. ; Hurvitz, Edward A. ; Peterson, Mark D. ; van der Slot, Wilma M. A. ; Roebroeck, Marij E. ; Gorter, Jan Willem. / Multimorbidity risk assessment in adolescents and adults with cerebral palsy: a protocol for establishing a core outcome set for clinical research and practice. In: Trials. 2019 ; Vol. 20, No. 1.
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title = "Multimorbidity risk assessment in adolescents and adults with cerebral palsy: a protocol for establishing a core outcome set for clinical research and practice",
abstract = "Background: 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. Methods: The 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. Discussion: This 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.",
author = "McPhee, {Patrick G.} and Benner, {Joyce L.} and Balemans, {Astrid C. J.} and Olaf Verschuren and {van den Berg-Emons}, {Rita J. G.} and Hurvitz, {Edward A.} and Peterson, {Mark D.} and {van der Slot}, {Wilma M. A.} and Roebroeck, {Marij E.} and Gorter, {Jan Willem}",
year = "2019",
doi = "10.1186/s13063-019-3265-z",
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McPhee, PG, Benner, JL, Balemans, ACJ, Verschuren, O, van den Berg-Emons, RJG, Hurvitz, EA, Peterson, MD, van der Slot, WMA, Roebroeck, ME & Gorter, JW 2019, 'Multimorbidity risk assessment in adolescents and adults with cerebral palsy: a protocol for establishing a core outcome set for clinical research and practice' Trials, vol. 20, no. 1, 176. https://doi.org/10.1186/s13063-019-3265-z

Multimorbidity risk assessment in adolescents and adults with cerebral palsy: a protocol for establishing a core outcome set for clinical research and practice. / McPhee, Patrick G.; Benner, Joyce L.; Balemans, Astrid C. J.; Verschuren, Olaf; van den Berg-Emons, Rita J. G.; Hurvitz, Edward A.; Peterson, Mark D.; van der Slot, Wilma M. A.; Roebroeck, Marij E.; Gorter, Jan Willem.

In: Trials, Vol. 20, No. 1, 176, 2019.

Research output: Contribution to journalArticleAcademicpeer-review

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T1 - Multimorbidity risk assessment in adolescents and adults with cerebral palsy: a protocol for establishing a core outcome set for clinical research and practice

AU - McPhee, Patrick G.

AU - Benner, Joyce L.

AU - Balemans, Astrid C. J.

AU - Verschuren, Olaf

AU - van den Berg-Emons, Rita J. G.

AU - Hurvitz, Edward A.

AU - Peterson, Mark D.

AU - van der Slot, Wilma M. A.

AU - Roebroeck, Marij E.

AU - Gorter, Jan Willem

PY - 2019

Y1 - 2019

N2 - Background: 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. Methods: The 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. Discussion: This 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.

AB - Background: 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. Methods: The 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. Discussion: This 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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