On Track

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Developmental Trajectories of Children with CP


The On Track Study is a large multi-site collaboration involving researchers, therapists, families, and children with cerebral palsy (CP) from across Canada and the United States. The aim of the CIHR funded study is to describe the changes in balance (a primary impairment), range of motion limitations, strength, and endurance (secondary impairments), number and impact of health conditions, and participation in self-care, recreation, and leisure activities over a one-year period in young children with CP aged 18 months through 11 years. We aim to recruit 175 children with CP, aged 18 months to 10 years, in each of the 5 levels of the Gross Motor Function Classification System (GMFCS) for a total sample of 875 families. The On Track Study will recruit some families involved in our previous Move & PLAY study, as well as welcoming some new children and their families to the project. Trained therapist assessors will measure the primary and secondary impairments (i.e. balance, range of motion limitations, and strength) on 2 occasions (12-months apart). Parents will complete questionnaires to track changes in the child's endurance, health conditions, and participation in self-care and recreation activities, at the same data collection points. We will use these 2 data collection points to develop reference percentiles and we will present the data so that therapists can assist families to determine if children with CP are developing as expected, better than expected, or more poorly than expected, depending on their functional ability levels.

Partnering with Families of Children with Cerebral Palsy

Checking Up and Checking In: Partnering with Families of Children with Cerebral Palsy
​A video inspired by parent members of the On Track study team and funded by PCORI. 

Creating the Future: Engaging Children with Cerebral Palsy in the Circle of Care
​A video inspired by parent members of the On Track study team and funded by PCORI. ​

EXCITING NEWS!  A two part article authored by parent members of the On Track Study Team has been published in eParent Magazine.

Part 1 Bringing the Families Voice to Research: Parents as Members of the Research Team

Part 2 Bringing the Family's Voice to Research: How Families Contribute to Research

In 2013, our team was awarded additional funding (PCORI) to complement the original On Track Study by increasing data collection in a subsample of 600 children with cerebral palsy across all 5 GMFCS levels. Rather than having two observations across one year, this subsample will have five observations (6-months apart) across two years. With these data the first additional study aim is to create longitudinal developmental curves for impairments, health conditions, and participation variables by estimating the average pattern of change, important individual variations in the pattern of change between children, and the degree of consistency over time within children. Establishment of longitudinal developmental curves will provide easily understood and useful tools for families and service providers to discuss questions about how well their children are doing in relationship to other children with CP of similar functional ability levels. The second study aim is to utilize service data collected from parents and children's progress on the longitudinal developmental curves to develop recommendations for rehabilitation service provision for children with CP across functional ability levels. Having this information should assist with collaborative decision-making among family members and service providers that efficiently utilizes rehabilitation services to meet families' goals. To date this information does not exist, rather, many different types and intensities of services are recommended based primarily on convention, clinicians' past experiences, and education rather than on evidence of children's potentials to achieve goals. An additional sub-study under the PCORI funding is to collect direct physical activity measurements from a sub-set of the children in the larger study. These data will be examined in relationship to other measures of endurance and participation.

724 families were enrolled in the On Track Study

656 families completed the 2-visit study (2 visits across one year)

424 families completed the 5-visit study (5 visits, every 6 months from study entry)

Recruitment

Double-click the interactive map below to zoom-in on our recruitment sites

Research Team

Principal Investigator: Canadian Institutes of Health Research (CIHR), Canada


  • Doreen Bartlett, BScPT, PhD, Professor Emerita, School of Physical Therapy, Western University, London, Ontario, Canada and Scientist Emeritus, CanChild Centre for Childhood Disability Research, McMaster University, Hamilton, Ontario, Canada


Principal Investigator: Patient-Centered Outcomes Research Institute (PCORI), USA


  • Sarah (Sally) Westcott McCoy, PT, PhD, FAPTA, Professor, Department of Rehabilitation Medicine, University of Washington, Seattle, Washington, United States


Co-Investigators - CIHR & PCORI


  • Lisa Chiarello, PT, PhD, FAPTA, Professor, Department of Physical Therapy and Rehabilitation, Sciences, Drexel University, Philadelphia, Pennsylvania, United States
  • Bob Palisano, PT, ScD, FAPTA, Distinguished Professor,  Department of Physical Therapy and Rehabilitation, Drexel University, Philadelphia, Pennsylvania, United States, and Scientist, CanChild Centre for Childhood Disability Research, McMaster University, Hamilton, Ontario, Canada
  • Lynn Jeffries, PT, DPT, PhD, PCS, Associate Professor, Department of Rehabilitation Sciences, University of Oklahoma Health Sciences Center, Oklahoma City, Oklahoma, United States
  • Alyssa LaForme-Fiss, PT, PhD, PCS, Associate Professor, Department of Physical Therapy, Mercer University, Atlanta, Georgia, United States
  • Jan Willem Gorter, MD, PhD, FRCP(C), Associate Professor, Department of Pediatrics, Scotiabank Chair in Child Health Research and Director, CanChild Centre for Childhood Disability Research, McMaster University, Hamilton, Ontario, Canada
  • Steve Hanna, PhD, Professor, Department of Clinical Epidemiology and Biostatistics, and Scientist, CanChild Centre for Childhood Disability Research, McMaster University, Hamilton, Ontario, Canada


Co-Investigator - PCORI


  • Kristie Bjornson, PhD, PT, PCS, Associate Professor, Department of Pediatrics, University of Washington, Seattle, Washington, United States
  • Cheryl Kerfeld, PhD, PT, Acting Assistant Professor, Department of Rehabilitation Medicine, University of Washington, Seattle, Washington, United States


Parent Investigators - CIHR & PCORI



Parent Investigators - PCORI



Study Coordinator for Canada and USA - CIHR



Study Coordinator for USA and Canada - PCORI



Regional Coordinators - CIHR & PCORI



PhD Students



For general study information, please contact the On Track Project Coordinator for Canada and USA, Barb Galuppi galuppi@mcmaster.ca or Monica Smersh msmersh@uw.edu

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Funder

CIHR (Canadian Institutes of Health Research Operating Grant MOP #119276) 2012 - 2017

PCORI (Patient-Centered Outcomes Research Institute Contract #5321) 2013 - 2016

Outcomes (Measures)

Study Assessors collect information about:



People involved in research studies sometimes wonder why they don't get more information about 'how they did' in the tests or assessments that the researchers do. We thought it might be helpful to explain why this is so.

When people visit a doctor or therapist we expect to receive individual attention! This means that the questions that are asked, the information provided, and the recommendations made are all done for that specific purpose and for that specific person.

On the other hand, in a research study we try to ask everyone the same questions, so we can gather "standardized" information. This allows us to look for patterns in the information when we put it all together at the end of the period of study. That way we can hopefully make some general comments about what we are studying. For this reason, the On Track Study Assessor's role is not to provide feedback about each child and family's assessments, or to offer advice about therapy.

Involving families in the research process is an important goal of this project. Within a few months of each study visit, families participating in the study will be sent a summary report explaining the results of testing for their child. (See Parent Feedback Forms below) 

Resources

COMING IN 2018 - ON TRACK STUDY RESULTS & RESOURCES FOR MONITORING DEVELOPMENTAL PROGRESS

OVERVIEW: CHECKING UP AND CHECKING IN TO KEEP ON TRACK

On Track study longitudinal trajectories and reference percentiles results fit nicely with the goals of regular check-ups and check-ins between children with cerebral palsy (CP) and their families and health care professionals: finding the balance between results of standardized assessments and individual priorities of families

The On Track Study (2012-2017) involved 708 children with CP and their families, therapists and researchers from across Canada and the United States. The On Track study research results for children with CP give us a framework for developmental assessment, monitoring and planning of individualized care. Check-ups and check-ins help us work toward the best possible development for your child. We can work together using the On Track study research results to monitor comprehensively:

  • Balance
  • Strength
  • Range of Motion
  • Endurance
  • Impact ofHealth Conditions Associated with CP on Daily Life
  • Participation in Family and Recreational Activities
  • Performance in Self-care Activities

Longitudinal trajectories provide useful tools for families and therapists to discuss questions about how well children are doing on a given measure in relationship to the average values of other children with CP of similar functional ability levels (prediction and prognosis), and allow for more efficient intervention planning linked to realistic goals. They yield information about the course of development for children within a level including variability in the expected limit of the outcome and how long it takes to get there. Because of this variability, they need to be used as a prognostic guide for children’s current development and what changes might be anticipated but should not be used to evaluate an individual child’s progress over time. Therapists are encouraged to use these longitudinal trajectories to support collaborative discussions with families regarding their children’s prognosis and to proactively plan services and targeted intervention activities.

Reference percentiles can help to track children’s change across time by indicating how a child is progressing relative to peers of the same ability level and of a similar age. A single assessment permits an understanding of a child’s individual strengths and limitations related. Specifically, the reference percentiles might be useful in flagging the outcome as a potential area for intervention or, conversely, maybe to indicate that, relative to peers, this is an area of strength and not an intervention focus.  However, some children and families may choose to take a ‘strengths-based approach’ and continue to focus on optimizing an area of strength.   Completing a second assessment later in time provides an understanding of change in abilities over time.  This comparison of percentiles allows therapists and families to determine if an individual child with CP is demonstrating scores that are progressing ‘as expected’, ‘more than expected,’ or ‘less than expected’ over time, depending on their functional ability levels.  Because percentiles represent a relative standing at a moment in time, decisions about services should be supplemented with an analysis of the child’s function via examination of raw scores and the context of the testing sessions (i.e. child’s cooperation with testing, environmental distractions, etc.). 

Together, you can use these results in collaborative discussions with a family to:

  • RECORD a child’s current assessment scores and how the child is progressing in those areas, relative to what we might expect.
  • DISCUSS a child’s strengths and important areas for improvement, and make notes to help individualize the child’s treatment plan.

For families who find it helpful, this type of developmental monitoring is a place to start the conversation about what we might expect to see based on assessments of children in similar functional levels of CP.

RESOURCES FOR CHILDREN AND FAMILIES

  • Plain Language Summary of Results (Coming soon)
  • Video Summary of Results (Coming soon)

RESOURCES FOR THERAPISTS

  • Presentation with audio and video: Background and Overview of On Track Study (Coming soon)
  • Measures: Assessment Forms and Training Videos 
  • Interactive Spreadsheet for Interpreting Developmental Progress (Coming soon)
  • Collaborating with Families Videos (Coming soon)

RESOURCES FOR ADMINISTRATORS

FREQUENTLY ASKED QUESTIONS (Coming soon)

If you would like to receive an alert when results are posted, please contact Barb Galuppi  galuppi@mcmaster.ca

Promotional Brochures

2-visit study brochure (English, French)

5-visit study brochure (English, French, Spanish)

Newsletters

On Track Study Family Newsletter, First Edition, March 2014 (English) (Spanish)

On Track Study Family Newsletter, Second Edition, September 2014 (English) (Spanish)

On Track Study Family Newsletter, Third Edition, June 2015 (English) (Spanish)

On Track Study Family Newsletter, Fourth Edition, May 2016 (English) (Spanish)

On Track Study Family Newsletter, Fifth Edition, January 2017 (English) (Spanish)

Selected Presentations & Posters

Demonstration Poster Presented at American Academy for Cerebral Palsy and Developmental Medicine (AACPDM) Conference in Milwaukee, Wisconsin, USA (October 2013) and Ontario Association of Children's Rehabilitation Services (OACRS) Conference, Toronto, ON, CANADA (November 2013):

Demonstration Poster Presented at Section on Pediatrics of the American Physical Therapy Association (SoPAC) Conference in St. Louis, Missouri, USA (October 2014):

Poster Presented at the Combined Sections Meeting of the American Physical Therapy Association, Indianapolis, USA (February 2015). Also presented at Western University's Faculty of Health Sciences Research Day, London, ON, CANADA (March 2015) and Child Health Research Symposium, London, ON, CANADA (May 2015):

Poster Presented at Western University's Faculty of Health Sciences Research Day, London ON, CANADA (March 2015) and Child Health Research Symposium, London, ON, CANADA (May 2015) and Ontario Association of Children's Rehabilitation Services (OACRS) Conference, Toronto, ON, CANADA (Nov 2015):

Poster Presented at Child Health Research Symposium, London, ON, CANADA (May 2015):

Instructional Course presentation at the American Academy for Cerebral Palsy and Developmental Medicine (AACPDM) in Austin, Texas, USA in Oct 2015.

Presentation at Division of Early Childhood (DEC): 31st Annual International Conference on Young Children with Special Needs and Their Families in Atlanta, Georgia, USA in Oct 2015:

Presentation at the Combined Sections Meeting of the American Physical Therapy Association (APTA)  in Anaheim, California, USA in February 2016:

Poster Presented at Combined Sections Meeting (CSM), American Physical Therapy Association (APTA), in Anaheim, California, USA in February 2016.

Presentation at Combined Sections Meeting (CSM), American Physical Therapy Association (APTA), in Anaheim, California, USA in February 2016.

Poster Presented at Combined Sections Meeting (CSM), American Physical Therapy Association (APTA), in Anaheim, California, USA in February 2016.

Poster Presented at Combined Sections Meeting (CSM), American Physical Therapy Association (APTA), in Anaheim, California, USA in February 2016.

Mini-symposium presentation at 5th International Conference of Cerebral Palsy (ICPC) Stockholm, Sweden in June 2016.

Poster Presented at 5th International Conference of Cerebral Palsy (ICPC) Stockholm, Sweden in June 2016.

Poster Presented at 5th International Conference of Cerebral Palsy (ICPC) Stockholm, Sweden in June 2016.

Poster Presented at 5th International Conference of Cerebral Palsy (ICPC) Stockholm, Sweden in June 2016.

Poster Presented at IV Step Prevention, Prediction, Plasticity, and Participation, Ohio in July 2016

Poster Presented at IV Step Prevention, Prediction, Plasticity, and Participation, Ohio in July 2016

Poster Presented at IV Step Prevention, Prediction, Plasticity, and Participation, Ohio in July 2016

Poster Presented at IV Step Prevention, Prediction, Plasticity, and Participation, Ohio in July 2016

Poster Presented at American Academy for Cerebral Palsy and Developmental Medicine (AACPDM), Florida in September 2016

Poster Presented at American Academy for Cerebral Palsy and Developmental Medicine (AACPDM), Florida in September 2016

Instructional Course presented at the American Physical Therapy Association Combined Sections Meeting (CSM), Texas in February 2017

Articles

Jeevanantham, Deepa MPT; Dyszuk, Emily MSc; Bartlett, Doreen PT, PhD. The Manual Ability Classification System: A Scoping Review. Pediatric Physical Therapy: Fall 2015 - Volume 27 - Issue 3 - p 236-241 (online)

Bartlett D, Galuppi B, Palisano R, McCoy S. Consensus classifications of gross motor, manual ability, and communication function classification systems between therapists and parents of children with cerebral palsy. Letter to the Editor. Developmental Medicine and Child Neurology, 2016; 58:98-99. (online)

Robert J. Palisano (2016) Bringing the Family's Voice to Research, Physical & Occupational Therapy In Pediatrics, 36:3, 229-231, (online)

Natalie V. Scime, Doreen J. Bartlett, Laura K. Brunton & Robert J. Palisano. (2016). Parents’ Experiences and Perceptions when Classifying their Children with Cerebral Palsy: Recommendations for Service Providers. Physical & Occupational Therapy In Pediatrics, Early online DOI: 10.1080/01942638.2016.1185505

Doreen Bartlett, Lisa A. Chiarello, Tina Hjorngaard & Barbara Sieck Taylor (2016). Moving from parent “consultant” to parent “collaborator”: one pediatric research team’s experience. Disability and Rehabilitation. Pages 1-8 | Received 15 Dec 2015, Accepted 28 Jul 2016, Published online: 27 Sep 2016. http://dx.doi.org/10.1080/09638288.2016.1219402

Reports

Family Feedback Forms

Family Feedback Form sample

After each study visit, parents will receive individualized feedback with a summary of their child's scores in Balance, Strength, Range of Motion, Endurance, Overall health, Participation in Family and Recreational Activities and Self-Care Activities. This report allows us to give families some immediate, brief feedback about the visits. However, more detailed results will be available at the end of the study once we have completed all the visits over time for the large group of children in the study.

Parents are encouraged to share the feedback forms with the child's treating therapist(s) to help therapists consider how child, family, and service factors interact when planning interventions and evaluating outcomes. The intent is to facilitate this exchange between families and therapists to broaden the focus of rehabilitation services for young children with CP to include not only development of motor abilities but also comprehensive interventions and supports to enhance participation in daily activities and routines.

Optimizing Collaborative Care: Student projects to learn about how best to share results with health care providers, children, parents and families

Alisiyah Daya worked under the supervision of Doreen Bartlett on a Deliberative Dialogue project. The research planning group included a CanChild scientist and physical therapist from Western University, MSc Students, a deliberative dialogue consultant, a parent of a young adult with cerebral palsy, a project coordinator, a physical therapist who is a professional practice leader, and a facilitator who has expertise in facilitating research evidence into clinical practice. A Deliberative Dialogue focuses on critical issues by bringing together research evidence and ‘stakeholders’ for a discussion to inform future actions and policy. The Dialogue discussion has representatives from many groups involved in or affected by decisions about the particular issue. The entire group learns from the different views and experiences at the table. This collaboration can uncover unique understandings of the issue and spark insights for solutions and considerations. The focus of our Deliberative Dialogue was on ways to encourage youth with CP, their families, their service providers, and associated administrators and policy makers in Ontario Association of Children’s Rehabilitation Services (OACRS) centres to use the research evidence from CanChild’s Ontario Motor Growth, ASQME, Move & PLAY and On Track studies in a family-centered way to support the goals of individual children with cerebral palsy and their families. Participants invited to be involved in the Deliberative Dialogue in November 2016 included parents of children with cerebral palsy, young adults with cerebral palsy, physical and occupational therapists and physicians all of whom work with children with cerebral palsy, representatives from the OACRS centres, representatives from the Ministry of Child and Youth Services, people with expertise related to services in rural areas. This preliminary summary was sent to participants after the meeting and follow up interviews were organized and transcribed from audio. The interview results were analyzed together with all Deliberative Dialogue information gathered throughout the process. Deliberative Dialogue Summary | Alisiyah Daya's Thesis

Tianna Deluzio worked under the supervision of Doreen Bartlett on a Knowledge Translation project. The goal of this project was to better understand how children with cerebral palsy (CP) and their families would like to receive development-related information, especially that obtained from the Move & PLAY and On Track studies. By interviewing children with CP and their parents or guardians, a focus was placed on determining the format they prefer to receive information as well as the way(s) they intend to use the information (e.g. for sharing with a child’s school). In addition, children were asked about their experiences with therapists and language used in different environments to help us understand how we can present the information in a way that is both comprehensive and respectful. Following recruitment with the help from a physiotherapist from the Thames Valley Children’s Centre, ten children were recruited to participate in in this project with their parent(s) or guardian(s). The first stage of data collection involved sending a pre-interview questionnaire to participants. This questionnaire consisted of five multiple-choice questions designed to gauge CP-related information preferences prior to the interview. Following these questionnaires, a semi-structured interview was conducted with each family to gain a more in-depth understanding of their information preferences and overall experiences related to receiving CP-related information. The interviews were semi-structured, aiming for the open-ended questions to lead to a detailed, participant-guided exploration of the topic rather than a preconceived interrogation by the interviewer. The interviews were transcribed and analyzed and the analysis, discussion, and conclusion were written up. This work also led to the creation of mock-ups of potential information formats, which were sent to participants to gain their feedback and his will inform the progress reports that will be available as part of the Results and Resources from the On Track Study. Tianna Deluzio's Thesis

Parent to Parent Articles written by parents for parents

Parent to Parent articles are helpful resources written by the Parent Investigators in the On Track Study. New articles will be posted as they are available.

For more useful tips like these on the CanChild website, see Tips FOR parents of children and youth cerebral palsy, FROM parents (English)