Performance of physical activities by adolescents with cerebral palsy

Physical Therapy, 87(1): pp. 77-87.Background and Purpose Mobility and self-care are important considerations for successful transition of adolescents with cerebral palsy to adulthood. The purpose of this study was to characterize performance of physical activities from the perspective of adolescents themselves. Subjects The subjects were 156 adolescents with cerebral palsy, 11.6 to 17.7 years of age. Methods A therapist completed the Gross Motor Function Classification System (GMFCS). Adolescents completed the Activities Scale for Kids–Performance Version (ASKp) twice over a 1-year period. Results A repeated-measures analysis of variance indicated a main effect for GMFCS level. The main effect for time and the GMFCS level time interaction were not significant. Post hoc comparisons indicated that ASKp scores differed among all GMFCS levels. Discussion and Conclusion Performance of physical activities by adolescents with cerebral palsy differed based on GMFCS level and did not change over 1 year. The ASKp scores of adolescents in levels II through V suggest the need for physical assistance at times throughout the day. The results have implications for the role of the physical therapist in transition planning

Quality of life and health-related quality of life of adolescents with cerebral palsy

Developmental Medicine & Child Neurology, 49(7): pp. 516-521.This study assessed quality of life (QOL) and health-related quality of life (HRQOL) of 203 adolescents with cerebral palsy (111 males, 92 females; mean age 16y [SD 1y 9mo]). Participants were classified using the Gross Motor Function Classification System (GMFCS), as Level I (n=60), Level II (n=33), Level III (n=28), Level IV (n=50), or Level V (n=32). QOL was assessed by self (66.5%) or by proxy (33.5%) with the Quality of Life Instrument for People With Developmental Disabilities, which asks about the importance and satisfaction associated with the QOL domains of Being, Belonging, and Becoming; HRQOL was captured through proxy reports with the Health Utilities Index, Mark 3 (HUI3), which characterizes health in terms of eight attributes, each having five or six ordered levels of function. GMFCS level was not a source of variation for QOL domain scores but was significantly associated with the eight HRQOL attributes and overall HUI3 utility scores (p<0.05). Some QOL domain scores varied significantly by type of respondent (self vs proxy; p<0.05). Overall HUI3 utility values were significantly but weakly correlated with QOL Instrument scores for Being (r=0.37), Belonging (r=0.17), Becoming (r=0.20), and Overall QOL (r=0.28), and thus explain up to 14% of the variance (r2). These findings suggest that although QOL and HRQOL are somewhat related conceptually, they are different constructs and need to be considered as separate dimensions of the lives of people with functional limitations

Becoming and staying physically active in adolescents with cerebral palsy: protocol of a qualitative study of facilitators and barriers to physical activity

<p>Abstract</p> <p>Background</p> <p>Adolescents with cerebral palsy (CP) show a reduced physical activity (PA). Currently there are no interventions for adolescents with CP in this critical life phase that optimise and maintain the individuals' physical activity in the long term. To develop such a program it is important to fully understand the factors that influence physical activity behaviours in adolescents with CP. The aim of this study is to explore what makes it easy or hard for adolescents with CP to be and to become physically active.</p> <p>Methods/Design</p> <p>A qualitative research method is chosen to allow adolescents to voice their own opinion. Because we will investigate the lived experiences this study has a phenomenological approach. Thirty ambulatory and non-ambulatory adolescents (aged 10-18 years) with CP, classified as level I to IV on the Gross Motor Function Classification System and 30 parents of adolescents with CP will be invited to participate in one of the 6 focus groups or an individual interview. Therapists from all Children's Treatment Centres in Ontario, Canada, will be asked to fill in a survey. Focus groups will be audio- and videotaped and will approximately take 1.5 hours. The focus groups will be conducted by a facilitator and an assistant. In preparation of the focus groups, participants will fill in a demographic form with additional questions on physical activity. The information gathered from these questions and recent research on barriers and facilitators to physical activity will be used as a starting point for the content of the focus groups. Recordings of the focus groups will be transcribed and a content analysis approach will be used to code the transcripts. A preliminary summary of the coded data will be shared with the participants before themes will be refined.</p> <p>Discussion</p> <p>This study will help us gain insight and understanding of the participants' experiences and perspectives in PA, which can be of great importance when planning programs aimed at helping them to stay or to become physically active.</p

CHILD-BRIGHT READYorNot Brain-Based Disabilities Trial: protocol of a randomised controlled trial (RCT) investigating the effectiveness of a patient-facing e-health intervention designed to enhance healthcare transition readiness in youth

Introduction Youth with brain-based disabilities (BBDs), as well as their parents/caregivers, often feel ill-prepared for the transfer from paediatric to adult healthcare services. To address this pressing issue, we developed the MyREADY TransitionTM BBD App, a patient-facing e-health intervention. The primary aim of this randomised controlled trial (RCT) was to determine whether the App will result in greater transition readiness compared with usual care for youth with BBD. Secondary aims included exploring the contextual experiences of youth using the App, as well as the interactive processes of youth, their parents/caregivers and healthcare providers around use of the intervention.Methods and analysis We aimed to randomise 264 youth with BBD between 15 and 17 years of age, to receive existing services/usual care (control group) or to receive usual care along with the App (intervention group). Our recruitment strategy includes remote and virtual options in response to the current requirements for physical distancing due to the COVID-19 pandemic. We will use an embedded experimental model design which involves embedding a qualitative study within a RCT. The Transition Readiness Assessment Questionnaire will be administered as the primary outcome measure. Analysis of covariance will be used to compare change in the two groups on the primary outcome measure; analysis will be intention-to-treat. Interviews will be conducted with subsets of youth in the intervention group, as well as parents/caregivers and healthcare providers.Ethics and dissemination The study has been approved by the research ethics board of each participating site in four different regions in Canada. We will leverage our patient and family partnerships to find novel dissemination strategies. Study findings will be shared with the academic and stakeholder community, including dissemination of teaching and training tools through patient associations, and patient and family advocacy groups.Trial registration number NCT03852550