Supported Mobility Across the Lifespan in Cerebral Palsy

Supported Mobility Across the Lifespan in Cerebral Palsy: Joint Decision Making Kristie Bjornson, PT, Ph. D, MS Deborah Gaebler, MD Heather Feldner, PT, Ph. D, PCS CPRN Investigator Meeting- Houston, TX May 30, 2018

Research Vision: • Together with CP communities, we propose: • a supported mobility research project • the foundation for identifying the barriers, facilitators, and strategies for people with CP to engage in joint mobility decision-making across the lifespan, • ultimately lead to the development of a specific supported mobility device (SMD) clinical algorithm • We propose to explore the influence of development, functional mobility, age, and environment on supported mobility across the lifespan in the US.

Specific Aims: 1. Qualitatively understand the mobility experiences, supported mobility device (SMD) use, and desired participation outcomes of children, youth, and adults with CP. 2. Describe how perspectives of rehabilitation care providers (therapists, physicians, DME vendors) and professional resources (time, knowledge, etc. ) may influence shared mobility decision-making with people with CP and their caregivers.

Specific Aims: 3. Construct/administer a tool to quantitatively identify the probability of walking, assisted mobility and/or wheeled mobility across the life span in people with CP in the US by age, environment, and Gross Motor Function Classification System (GMFCS) level, and related needs/priorities.

Methods: • Using a mixed methods approach: • Aims 1 & 2 will employ semi-structured interviews, focus groups, and a ‘photo narrative’ approach. • Verbatim transcription of this data will be coded for analysis. • Building on the rich information captured in Aims 1 & 2, we will create a ‘smart’ online survey to capture: • the supported mobility experiences and strategies of people with CP across the US.

Patient Centered Outcomes: Interviews & Focus Groups • Describe what mobility means for you and your family. • How have your mobility needs evolved over time? • What features are most important for you when picking out a mobility device? • (Children) What features did you get to pick out on your current mobility device? • (Adults) Who has been involved in your mobility decisions? What roles has each person played? • (Clinicians) Describe the processes you go through with a family when discussing/deciding on a supported mobility device.

Patient Centered Outcomes: Photo. Voice Narrative “I love the ramp, because I love going down the ramp and going up the ramp. I get to the drinking fountain when I go up the ramp. ” (Jamie, Photovoice, 2016) “He is just a happy boy. He’s concentrating and working hard, but he is…I love when he puts his tongue out, when he stands up…who would have thought that you could have

Methods/Patient Centered Outcomes • Analysis of smart survey data: • Describe probability of walking, assisted or supported mobility by age band, GMFCS level and environment, home/community • prioritize participants’ preferences and values by age and functional level. • This knowledge will direct the research team to construct: • Clinical algorithm to support persons with CP, families, and clinicians to engage in SMD joint mobility decision-making throughout the lifespan.

Importance to CP Community: Stakeholder voice- Mobility • Persons with CP – • long term supported mobility device (SMD) needs across the lifespan • minimize pain and fatigue • maximize activity, participation, and health in people with CP across all ages and functional levels

State of Science – Joint Decision Making/SMD • No literature - describes the use of a decisionmaking across the lifespan of people with CP. • Unknown how joint decision-making evolves, as children with CP begin to assume more responsibility regarding their care as they age. (Young, 2006) • Unknown -influence of SMDs on the lives of people with CP, across varying ages and functional levels. • Even less is understood about the processes of mobility device selection.

Importance to CPRN • Addresses priority of persons with CP across lifespan • CPRN support: • Engaging CPRN sites for • focus groups recruitment • SMART Survey recruitment • Combined analysis of Smart survey results with clinical registry • Long Term- Roll out of the clinical algorithm for SMD • DCC – data management/analysis support • Networking with Primary stakeholders and advocacy groups including (but not limited to): CP NOW, Neonatal Stroke Association, CPRF, CP Alliance, Pediatric Stroke Warriors

SMD Project Progress to Date: • LOI for a PCORI Engagement award • submitted February 1, 2018 /declined April 1, 2018 • CLEAR Pilot grant (UW center for musculoskeletal research) • New Investigator initiative, proposal focused only on Aim 1 pilot data • Submitted April 15/declined May 8, 2018 • Feedback was that idea was excellent but not applicable to targeted research areas of funder, suggested PCORI as a great fit (!) • AACPDM Research Grant submitted April 15, 2018 • For shorten protocol for Aims 1 & 2 only • Proposal to fund focus groups across 4 sites • Planned NIDILRR submission fall 2018 -winter 2019 • Other Funding suggestions?

Four Focus Group Sites – • Seattle Children’s Hospital, Seattle WA- confirmed focus group site with Dr Bjornson as site lead. • Shirley Ryan Ability Lab (SRAL) –Chicago, IL. - confirmed as a focus group site with Dr Debra Gaebler. • University of California Los Angeles/Orthopedic Institute for Children’s Center for Cerebral Palsy (UCLA/OIC-CP) confirmed as a focus group site with Eileen Fowler and Marcia Greenberg • Weinberg Family Cerebral Palsy Center, Department of Orthopaedic Surgery, Morgan Stanley Children’s Hospital of New York Presbyterian Columbia University Medical Center- in process of confirmation discussion as a focus group site with Dr David Roye and Fay Callejo.

Stakeholder Advisory Board: • Sariya Rashid, • Parent of child with CP GMFCS level V • Karla Lynch, • Adult with CP; GMFCS level II • Candi Styer • Parent of child with CP GMFCS level III, Special educator • Tim Caruso, • PT-Therapist/Vendor • David Pruitt • Adult with CP, Rehab Medicine Physician • Susan Johnson Taylor • Vendor/Occupational Therapist • Lauren Rosen • Physical Therapist, ATP • Holly Wakefield • PT, Seating & Mobility • Jan Brunstrom-Hernandez • Adult with CP, Pediatric Neurologist • Catherine Dimou , MD • CIGNA --payor

Discussion/Questions? SUGGESTIONS?