ParticiPAte CP: a randomised, waitlist-controlled trial of a physiotherapy and behaviour change intervention to increase physical activity through participation for children with cerebral palsy and their caregiver

Abstract

Background: Participation in activities of choice is a human right of all children. Children with cerebral palsy (CP) participate in fewer leisure-time physical activities (PAs), less often than typically developing children. Children with CP are less likely to meet evidence-based guidelines for habitual PA (HPA; daily energy expenditure and intensity). Australian guidelines recommend that children 5-12 years of age accumulate at least 60 min∙day-1 of moderate-vigorous PA (MVPA). Children with CP face many barriers to participating in PAs. Most of these barriers are environmental factors, for example, lack of accessible programs or lack of access to adaptive equipment. Despite this, the majority of existing interventions aiming to enable participation in PAs are directed at impairments or activity limitations. Participation-focused therapy is proposed as a means of enabling participation in children and youth with disabilities, however there is currently no high-quality evidence of the efficacy of participation-focused therapy to increase PA participation and HPA in children with CP.Aim: The aims of this doctoral program were to: (i) determine the efficacy of therapy and behaviour change interventions to increase participation in leisure time PAs in children aged 5-18 years with CP; (ii) describe the contents of those interventions according to how they act to change behaviour; (iii) design and propose a model of participation-focused therapy based on best available evidence aimed to enable participation in leisure-time PAs (ParticiPAte CP); (iv) test the efficacy of ParticiPAte CP to increase perceived performance of and satisfaction with leisure-time PA participation goals in children with CP compared to usual care; and (v) determine whether increased perceived performance of participation goals translated into increased objectively measured HPA.Methods: A systematic review of five databases and meta-analyses were performed. Intervention components were extracted and mapped against the Theoretical Domains Framework (TDF) to identify how they acted to change PA behaviour. This informed the development of ParticiPAte CP: an eight-week goal-directed, motivational, participation-focused physiotherapy intervention to overcome individual barriers to PA participation. A randomized, waitlist-controlled trial was chosen to assess the efficacy of ParticiPAte CP in children with CP aged 8-12 years at Gross Motor Function Classification System (GMFCS) levels I-III. Participants were allocated to receive ParticiPate CP immediately (n=18) or waitlist usual care (n=19). Outcomes were assessed at baseline, eight weeks (immediately post-intervention), and 16 weeks (follow-up). The primary outcome was perceived performance of and satisfaction with leisure-time PA participation goals on the Canadian Occupational Performance Measure (COPM). Secondary outcomes included objectively-measured HPA performance (free-living tri-axial accelerometry), goal confidence (self-efficacy), behavioural barriers to participation in PAs, health-related quality of life (QOL), and community participation frequency and involvement.Results: Eight studies of moderate-high quality were included in the systematic review. The majority of interventions used physical training as a primary modality with few to no components targeting other domains of behaviour (such as environmental context and resources, motivation etc.). The systematic review and meta-analyses found no clinically meaningful effect of interventions to increase PA participation nor HPA in children and youth with CP. Goal-directed interventions including behavioural and motivational components appeared to have the best potential to improve participation in PAs. ParticiPAte CP was proposed as the first randomized controlled trial of a participation-focused intervention. Children who received ParticiPAte CP had significant, clinically meaningful improvements in PA goal performance on the COPM, and reduced barriers to participation compared with children receiving usual care at eight weeks. Children who received ParticiPAte CP remained confident that they would achieve their goals compared to waitlisted children who had reduced confidence at eight weeks. There were no between-group differences on secondary outcomes of HPA (min∙day-1 MVPA or sedentary behaviour), health-related QOL or community participation. Analysis of a paired (pre-post) sample of all children with valid accelerometry data, however, revealed that children not yet meeting Australian HPA guidelines at baseline had an additional 6 min∙day-1 MVPA following ParticiPAte CP. This indicated a potential treatment effect in low active children.Conclusion: ParticiPAte CP was effective to increase self-perceived participation of ambulant children with CP aged 8-12 years in leisure-time PAs of their choice. Change in parent-reported barriers to participation and maintenance of child self-efficacy supported the underlying theory and mechanism of action (that the intervention worked by reducing barriers and supporting participant self-determination). This randomized trial increased the quality of the evidence-base supporting contextualised, individually-tailored participation-focused therapies that primarily combat barriers to participation rather than aim to change a child’s physical capacity. Lack of between-group change in min∙day-1 MVPA suggests that either additional steps such as social and policy level changes are required to facilitate change in objective PA behaviour, patient selection should be optimized, or that current data reduction methods are inadequate to detect change in activity type (mode).