A core outcome set for multimorbidity risk in individuals with cerebral palsy

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 (rho=0.53, p<0.01) and endurance (rho=-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.

Automated summary

This study aimed to assess the importance of outcome measurement instruments (OMIs) within a core outcome set (COS) for assessing multimorbidity risk in individuals with cerebral palsy (CP). The feasibility of using OMIs in international clinical research settings for CP patients was also investigated. The results showed that poor sleep quality, limited endurance, unhealthy diets, and sedentary behavior were common among CP patients. These outcomes were valued as important by the participants, suggesting a need for assessment and intervention in these areas. Objective measures of physical behavior and endurance in the COS required additional resources and personnel. As a recommendation, healthcare providers should consider using questionnaire-based assessments for initial screening before implementing more resource-intensive assessments.