The effects of a pragmatic community exercise programme in adolescents and young adults with Cerebral Palsy

Evidence suggests that the walking ability of people with cerebral palsy (CP) often deteriorates in early adulthood. This is especially problematic as the health care for young people with disabilities changes considerably over the course of the transition from paediatric to adult health care services. This suggests the importance of providing young people with the appropriate tools for managing their disability on a largely independent basis if they hope to reduce or delay this physical decline. One such strategy is the introduction of young people to an exercise programme which may be carried out independently of the health care system. Therefore, the main aim of this thesis was to investigate the feasibility and effectiveness of an 18-week pragmatic community exercise programme in adolescents and young adults with CP. Acknowledging the importance of assessing the effects of exercise studies using outcome measures (OMs) which are reliable, valid and responsive to change, a secondary aim of this thesis was to synthesise the psychometric evidence for the measures of gait quality and walking performance currently used for adolescents and young people with CP through a systematic review. Additional psychometric evidence for measures commonly used to assess the efficacy of exercise interventions was provided by a test-retest reliability study as part of this thesis. A standardised quality checklist (COSMIN) was used in the systematic review (Study 1) to measure methodological quality. The strength of the evidence was rated using standardised guidelines. The synthesis of best evidence was scored according to the Cochrane criteria, which indicated that the reliability (inter-rater) of the Functional Mobility Scale was characterised by a ‘strong’ level of evidence. The evidence for the responsiveness for all OMs included in this review was rated as ‘unknown’. Only one study reported on measurement error when reporting on reliability. In Study 2, test-retest reliability (Intraclass Correlation Coefficient (ICC) and Minimal Detectable Change) was calculated for physical function, habitual physical activity (HPA), quality of life (QoL) and self-esteem measures in a group of adolescents and young adults with CP (n=8) and their age-matched peers (n=14). The ICCs for physical function and HPA OMs ranged from moderate to good but were poor for the measures of QoL and self-esteem. The RCT (Study 3) showed no statistically significant improvement following the exercise programme in any of the OMs at 6 weeks (experimental n=9, control n=7). A small effect size (d=0.54) in favour of the experimental group was found for the Canadian Occupational Performance Measure (COPM). Considering the experimental group only, a statistically significant improvement was found for the COPM at 12 weeks (n=7, p=0.02) compared to the baseline. Feasibility issues were also identified. This study was limited by its small sample size. This thesis contributes to the evidence base on pragmatic community exercise programmes for adolescents and young adults with CP and confirms the test-retest reliability (consistency) of physical function and HPA OMs commonly used to assess the efficacy of exercise interventions in CP.