Longitudinal trajectories and reference centiles for the impact of health conditions on daily activities of children with cerebral palsy

Abstract

Aim First, to describe the impact of health conditions on daily activities over time in children with cerebral palsy (CP) and to create age‐specific reference centiles. Second, to determine the amount of change typical over a 1‐year period, across Gross Motor Function Classification System (GMFCS) levels. Method A prospective, cohort design, with five assessments over 2 years, involved 708 children with a confirmed diagnosis of CP participating in the On Track Study (396 males, 312 females; mean age 6y [SD 2y 7mo]; range 18mo–12y at first assessment; 32.1% in GMFCS level I, 22.7% in GMFCS level II, 11.2% in GMFCS level III, 18.2% in GMFCS level IV, 15.7% in GMFCS level V). The impact of health conditions on daily activities was assessed using the Child Health Conditions Questionnaire. Data were analyzed using mixed‐effects models and quantile regression. Results Linear longitudinal trajectories describe the relatively stable impact of health conditions over time for each functional level for children aged 2 years to 12 years, with the lowest scores (least impact) in GMFCS level I and the highest scores (highest impact) in GMFCS level V. Centiles were created for children in each GMFCS level. A system to interpret the magnitude of change over time in centiles was developed. Interpretation Longitudinal trajectories of co‐occurring health conditions assist with understanding children's prognoses. Centiles assist in understanding a child's experience relative to children in similar GMFCS levels. Guidelines are provided to determine if children are progressing ‘as expected’, ‘better than expected’ or ‘more poorly than expected’ in regard to the impact of health conditions on daily activities. What this paper adds For children with cerebral palsy, the mean impact of health conditions on daily activities is relatively stable. Significant intraindividual and interindividual variability for the impact of health conditions exists, which complicates prognosis. Centiles enable interpretation of the impact of health conditions relative to Gross Motor Function Classification System level.

Development of children, adolescents, and young adults with cerebral palsy according to the ICF: A scoping review

“…In the 38 studies that investigated the activity component, the outcomes measured changes in mobility ( n = 17 studies), 16,17,31,35,39,46,49,51,53,54,58,60,65,72,76,78,83 walking, carrying, moving, and handling objects ( n = 11), 31,32,35,49,50,54,65,66,71,76,82 self‐care ( n = 11), 31,39,46,51,53,54,66,72,79–81 communication (verbal and non‐verbal) ( n = 7), 36,41,47,61–63,70 socializing ( n = 5), 36,39,41,48,53 regulating behavior within interactions ( n = 1), 39 looking after one's health (i.e. physical activity, well‐being) ( n = 5), 34,56,64,68,77 and managing diet and fitness ( n = 1) 34 .…”

“…32,38,43,57,59,69,82,84 The 38 studies retrieved on the activity component showed differences between levels of the GMFCS. The main outcomes investigated were mobility, 16,17,31,35,39,46,49,51,53,54,58,60,65,72,76,78,83 walking, carrying, moving, and handling objects, 31,32,35,49,50,54,65,66,71,76,82 selfcare, 31,39,46,51,53,54,66,72,[79][80][81] and communication. 36,41,47,[61]…”

Longitudinal Trajectories and Reference Percentiles for Participation in Family and Recreational Activities of Children with Cerebral Palsy

“…How age may influence participation in family and recreational activities is complex and most likely depends on a multitude of child, family, and environmental factors (Alghamdi et al, 2017). Our accompanying study data on health conditions (Bartlett et al, 2018b) found that children, except for those in GMFCS level III, were likely to experience greater impact of health conditions on their daily life as they got older, and this was most prominent for children in GMFCS levels II and V. The impact of health conditions may be a plausible explanation for the possible decline found in frequency of participation for children in levels II and V.…”

Self-Care Trajectories and Reference Percentiles for Children with Cerebral Palsy

“…Mother's ratings changed from 5 to 3 (Does part of the activity independently but needs help for some of the activity) for the following activities (items): drying body and wiping nose. In reviewing scores of other measures completed as part of a comprehensive assessment during the On Track Study, Naiwen's percentile change on the Early Clinical Assessment of Balance(McCoy et al, 2012) and the Child Health Conditions Questionnaire(Bartlett et al, 2018) indicate progress was 'less than expected'. Noteworthy, on the Child Health Conditions Questionnaire, mother reported pain was affecting Naiwen's daily activities a 'moderate extent' compared to the previous year when she reported a 'small extent'.…”