Stay-FIT Program of Research: Physical Activity and Active Lifestyle Program for Youth with Cerebral Palsy

Children and youth with cerebral palsy (CP) have lower levels of physical activity (PA) than their typically developing peers. PA is thought to have a positive effect on quality of life for youth with CP. Conversely, lower levels of PA are associated with an increased risk of health problems later in life. We plan to develop a program to promote physical activity and encourage an active lifestyle in youth with cerebral palsy (CP) who are learning how to take care of themselves.

Stay fit program

1. Description: Collecting Youth Cardiovascular Health Outcomes

In order to determine the effectiveness of a physical activity intervention, we must first identify the current cardiovascular health status of youth with CP. Cardiovascular measures were collected from a sample population of youth with CP (GMFCS levels I and II) and compared to age- and sex-matched controls. There were no significant differences found in the vascular structure or function between the study and control groups, despite lower levels of engagement in vigorous physical activity among the participants with CP [see Martin et al., 2012].

2. Measurement: Feasibility of Activity Monitoring

To evaluate a physical activity intervention program, we need to be able to measure physical activity accurately. New technology (i.e. an accelerometer) that looks like a small pager provides the opportunity to detect someone's movement on a second-by-second basis over several days. In the pilot stage of the Stay-FIT program, we verified that accelerometers are a feasible and useful tool for assessing levels of physical activity in adolescents with CP. Ambulatory participants in the pilot study (GMFCS levels I and II) engaged in greater levels of physical activity compared to the non-ambulatory youth (GMFCS levels III and IV). Data from the pilot study that was gender-, age-, and season-matched to typically developing youth showed that youth with cerebral palsy experienced longer periods of sedentary behavior with less frequent breaks in sedentary time compared to their matched peers [See Gorter et al., 2012].

3. Focus Groups and Online Surveys: Gathering Information Regarding Facilitators and Barriers

Consultations with parents and youth with CP were conducted to determine what makes it easy or hard for youth with CP to be physically active [see Claassen et al., 2012]. Barriers and facilitators to physical activity identified by parents and youth include environmental and personal factors, motivations for being active, variation in preferences for the delivery of activities, and limitations related to impairments in body structure and function. To further validate and strengthen our understanding of the messages shared by focus group participants, we surveyed therapists at children treatment centres in Ontario to identify their perceptions of physical activity participation among adolescent clients with CP. Our enhanced understanding of these factors will help us build a new program to promote physical activity and an active lifestyle.

4. Community Partners and Program Development

Regional meetings with service providers, including municipal, public, and private organizations, were organized to gain an understanding of the environment in which youth with CP and their families participate in physical activity programs. Community partners were asked to verify the barriers and facilitators to physical activity identified in the parent and youth focus groups and to contribute their own ideas that will help us further develop our research questions. A secondary function of the regional meetings was to foster connections between service providers and identify strengths and sustainable features of the current system.

4.5. Description: Collecting Adult Physical Activity and Cardiovascular Health Outcomes

Currently, there is a lack of research on cardiovascular health outcomes among adults with CP. This extension of the Stay-FIT program of research aims to collect data on physical activity engagement and cardiovascular health outcomes in a sample of adults with CP aged 20-40, GMFCS levels III-V. This will help us further develop our understanding of the impact of physical activity on cardiovascular health in adults with CP.

5. Intervention Study

Based on the information gathered in the pilot stages of the Stay-FIT project, we aim to develop a larger intervention study to evaluate the effects of a new program to promote physical activity and encourage an active lifestyle in young people with CP.

Research Team

Principal Investigator

Jan Willem Gorter MD PhD

Co-investigators

Brian Timmons PhD, Robert Palisano PhD, Virginia Wright PhD, Peter Rosenbaum MD, Maureen MacDonald PhD

Project Team Members

Marilyn Wright, Denise McArthur, Stephen Noorduyn, Joyce Obeid, Patrick McPhee

For more information, please contact:

Marlice Simon, Project Coordinator
Phone: 905-525-9140 x26852
Email: msimon@mcmaster.ca

For more information on physical activity for children with a chronic health condition, visit the Child Health & Exercise Medicine Program.

Outcomes (Measures)

Cardiovascular health (ultrasound)

Physical activity (accelerometer, questionnaire)

Barriers and facilitators to physical activity (focus group/interview, questionnaire)

Project Updates

Resources

2013 Active Healthy Kids Canada Report Card (see page 24)

Surveys

Helping Adolescents with Cerebral Palsy to be Physically Active: Survey of OACRS Centres

Newsletters

Report to Study Participants: Accelerometry Feasibility Study

Report to Study Participants: Physical Activity Levels in Youth with CP During Therapeutic Horseback Riding

Report to Study Participants: Focus Group and Interview Participant Report

Poster Presentations

Poster presentation by Nai-Yuen Ho at McMaster

Poster presentation by Stephen Noorduyn at NASPEM Niagara on the Lake (September 2010)

Poster presentation by Dr. Gorter at NASPEM Niagara on the Lake (September 2010)

Poster presentation by Joyce Obeid at McMaster (September 2011)

Poster presented at OACRS conference in Toronto (November 2011)

Poster presentation Dr. Gorter (horseback riding) in Pisa Italy (October 2012)

Poster presentation on Stay-FIT Planning at OACRS Conference in Toronto (November 2012)

Poster presentation on Facilitation at OACRS Conference in Toronto (November 2012)

Oral Presentations

1.J. Obeid, S. Noorduyn, J.W. Gorter, and B.W. Timmons. Sedentary behaviour in youth with Cerebral Palsy and age-, gender- and season-matched controls - Children and Exercise XXVII: The Proceedings of the XXVIIth International Symposium of the European Group of Paediatric Work Physiology, September, 2011. [won award of excellence].

2.Jan Willem Gorter, Laura Brunton, Marilyn Wright, Lindsay Bray. "Physical Activity Matters" Everyday OFCP 2012 Conference, September 2012, Toronto AND also presented at Ontario Association of Childrens Rehabilitation Services (OACRS) Together For Excellence Conference, November 6, 2011,

3.J. Gorter, B. Timmons, J. Obeid, S. Noorduyn. Differences in Accumulation of Habitual Physical Activity in Adolescents with Cerebral Palsy and Age-, and Gender-Matched Controls. American Academy for Cerebral Palsy and Developmental Medicine (AACPDM), September 2012, Toronto.

4.Daphne Jackson, Jan Willem Gorter, Barb Galuppi, Lorie Shimmell, Marilyn Wright. Social factors determining physical activity in adolescents with cerebral palsy. International Cerebral Palsy Conference, Pisa Italy, October 2012. 

In Briefs

Claassen, A., Gorter, J.W. (2011). In brief: What helps adolescents with cerebral palsy to be physically active? Developing a program to support youth based on focus groups. CanChild Centre for Childhood Disability Research.

Gorter, J.W., McPhee, P. (2012). In brief: Determining Physical Activity Levels and Cardiovascular Health in Adults with Cerebral Palsy (Stay-FIT 20-40 years study). CanChild Centre for Childhood Disability Research.

Gorter, J.W., Noorduyn, S. (2012). In brief: Stay-FIT Pilot Study: Accelerometry is a good way to measure daily physical activity in adolescents with Cerebral Palsy. CanChild Centre for Childhood Disability Research

Articles

Shimmell, L.J., Gorter, J.W., Jackson, D., Wright, M., Galuppi, B. (2013). "It's the Participation that Motivates Him": Physical Activity Experiences of Youth with Cerebral Palsy and Their Parents. Physical & Occupational Therapy in Pediatrics, May 13; doi:10.3109/01942638.2013.791916

Claassen, A., Gorter, J.W., Stewart, D., Verschuren, O., Galuppi, B.E., & Shimmel, L.J. (2011). Becoming and staying physically active in adolescents with cerebral palsy: protocol of a qualitative study of facilitators and barriers to physical activity. BMC Pediatrics, Jan. 7; 11:1.

Gorter, J.W., Currie S.J. (2011). Aquatic exercise programs for children and adolescents with cerebral palsy: what do we know and where do we go? Int J Pediatr, 2011:712165

Gorter, J.W., Noorduyn, S.G., Obeid, J., & Timmons, B.W. (2012). Accelerometry: A feasible method to quantify physical activity in ambulatory and nonambulatory adolescents with cerebral palsy. International Journal of Pediatrics, vol. 2012, Article ID 329284, 6 pages. doi:10.1155/2012/329284.

Martin, A.A., Cotie, L.M., Timmons, B.W., Gorter, J.W., & MacDonald, M.J. (2012). Arterial structure and function in ambulatory adolescents with cerebral palsy are not different from healthy controls. International Journal of Pediatrics, vol. 2012, Article ID 168209, 8 pages. doi:10.1155/2012/168209

Noorduyn SG, Gorter JW, Verschuren O, Timmons BW. 2011. Exercise Intervention Programs for Children and Adolescents with Cerebral Palsy: A Descriptive Review of the Current Research. Crit Rev Phys Rehabil Med. 23(1-4) 31-47.