TY - JOUR
T1 - A core outcome set for multimorbidity risk in individuals with cerebral palsy
AU - McPhee, Patrick G.
AU - Benner, Joyce L.
AU - Sanvido, Liam
AU - Roebroeck, Marij E.
AU - van den Berg-Emons, Rita J.
AU - van der Slot, Wilma M.
AU - Verschuren, Olaf
AU - Hurvitz, Edward A.
AU - Peterson, Mark D.
AU - Gorter, Jan Willem
N1 - Funding Information:
This clinical research project was funded by an American Academy for Cerebral Palsy and Developmental Medicine Pedal with Pete grant. Dr McPhee is funded by a Canadian Institutes of Health Research Fellowship (no. FRN 164649). Dr Gorter holds the Scotiabank Chair in Child Health Research. We thank Dr Ronit Mesterman, McMaster University, and Dr Heidi Happala and Dr Mary Schmidt from the University of Michigan for their assistance with participant recruitment. Finally, we thank all the participants, including the CP NOW Foundation and its President, Michele Shusterman, for their involvement in this study.
Funding Information:
This clinical research project was funded by an American Academy for Cerebral Palsy and Developmental Medicine Pedal with Pete grant. Dr McPhee is funded by a Canadian Institutes of Health Research Fellowship (no. FRN 164649). Dr Gorter holds the Scotiabank Chair in Child Health Research. We thank Dr Ronit Mesterman, McMaster University, and Dr Heidi Happala and Dr Mary Schmidt from the University of Michigan for their assistance with participant recruitment. Finally, we thank all the participants, including the CP NOW Foundation and its President, Michele Shusterman, for their involvement in this study.
Publisher Copyright:
© 2022 Mac Keith Press.
PY - 2022/7
Y1 - 2022/7
N2 - Aim: To: (1) investigate the importance of outcome measurement instruments (OMIs) within a core outcome set (COS) for multimorbidity (at least two chronic health conditions) risk in individuals with cerebral palsy (CP); (2) investigate the feasibility of OMIs within the COS in international clinical research settings in adolescents and adults with CP; and (3) describe the associations between the COS data and Gross Motor Function Classification System (GMFCS) levels. Method: Eighty-three individuals with CP completed a survey on health outcomes: physical behaviour, nutrition, sleep, endurance, body composition, blood pressure, blood lipids, and glucose. A cross-sectional study assessed the feasibility of the COS in 67 adolescents and adults with CP (mean age 30y, SD 15y 1mo, min–max: 14–68y, 52.2% male) at four centres. Prevalence of multimorbidity risk and associations with GMFCS levels are described. Results: Most participants rated physical behaviour, nutrition, sleep, and endurance as very important. Body composition, blood pressure, nutrition, and sleep were highly feasible since data were collected in 88% or more participants who consented to having the assessments. Physical behaviour, cardiorespiratory endurance, and blood draws were collected in less than 60% of participants. Total time sedentary (ρ=0.53, p<0.01) and endurance (ρ=−0.46, p<0.01) were significantly associated with GMFCS level. Interpretation: The COS identified that most participants had poor sleep quality and endurance, did not have healthy diets, and showed increased sedentary behaviour. Individuals with CP valued these outcomes as most important, suggesting a need to assess these modifiable behaviours in this population. Objective measures of physical behaviour and cardiorespiratory endurance in the COS required additional personnel, time, and participant burden. We recommend that healthcare providers should perform a simpler first screen using questionnaire-based assessments and then focus the use of the remainder of the COS if required for the patient.
AB - Aim: To: (1) investigate the importance of outcome measurement instruments (OMIs) within a core outcome set (COS) for multimorbidity (at least two chronic health conditions) risk in individuals with cerebral palsy (CP); (2) investigate the feasibility of OMIs within the COS in international clinical research settings in adolescents and adults with CP; and (3) describe the associations between the COS data and Gross Motor Function Classification System (GMFCS) levels. Method: Eighty-three individuals with CP completed a survey on health outcomes: physical behaviour, nutrition, sleep, endurance, body composition, blood pressure, blood lipids, and glucose. A cross-sectional study assessed the feasibility of the COS in 67 adolescents and adults with CP (mean age 30y, SD 15y 1mo, min–max: 14–68y, 52.2% male) at four centres. Prevalence of multimorbidity risk and associations with GMFCS levels are described. Results: Most participants rated physical behaviour, nutrition, sleep, and endurance as very important. Body composition, blood pressure, nutrition, and sleep were highly feasible since data were collected in 88% or more participants who consented to having the assessments. Physical behaviour, cardiorespiratory endurance, and blood draws were collected in less than 60% of participants. Total time sedentary (ρ=0.53, p<0.01) and endurance (ρ=−0.46, p<0.01) were significantly associated with GMFCS level. Interpretation: The COS identified that most participants had poor sleep quality and endurance, did not have healthy diets, and showed increased sedentary behaviour. Individuals with CP valued these outcomes as most important, suggesting a need to assess these modifiable behaviours in this population. Objective measures of physical behaviour and cardiorespiratory endurance in the COS required additional personnel, time, and participant burden. We recommend that healthcare providers should perform a simpler first screen using questionnaire-based assessments and then focus the use of the remainder of the COS if required for the patient.
KW - Adolescent
KW - Adult
KW - Cerebral Palsy/epidemiology
KW - Cross-Sectional Studies
KW - Female
KW - Humans
KW - Male
KW - Multimorbidity
KW - Outcome Assessment, Health Care
KW - Sedentary Behavior
UR - http://www.scopus.com/inward/record.url?scp=85124727546&partnerID=8YFLogxK
U2 - 10.1111/dmcn.15181
DO - 10.1111/dmcn.15181
M3 - Article
C2 - 35174883
AN - SCOPUS:85124727546
SN - 0012-1622
VL - 64
SP - 881
EP - 889
JO - Developmental Medicine and Child Neurology
JF - Developmental Medicine and Child Neurology
IS - 7
ER -