Grants

???Thanks to the Beckwith Institute, the youth leaders have demonstrated that there are many pathways to success when transitioning to adult health care. Inherent to success, however, is that youth be afforded the opportunity to choose their own pathway." - Jonathan Pletcher, MD, Children???s Hospital of Pittsburgh of UPMC

DEVELOPMENT OF PATIENT-DRIVEN TOOLS FOR CARE TRANSITION FOR YOUNG ADULTS WITH CHRONIC ILLNESS

Grant Application

Jonathan Pletcher, MD, and Elizabeth Miller, MD, PhD, of Children’s Hospital of Pittsburgh of UPMC

 

Proposed Innovation

Teenagers and young adults with chronic disease or disability, such as autism, cerebral palsy, sickle cell, HIV, and other complex medical conditions, face significant challenges when transitioning from pediatric- to adult-centered health care. Illness can frustrate their ability to take responsibility for their own health, and progress in managing their condition might be lost.

To address this issue, the Children’s Hospital Advisory Network for Guidance and Empowerment (CHANGE), project will enlist youth leaders — patients with disabilities and chronic illness — to develop transition tools aimed at engaging and empowering young patients to assume health care responsibilities of adulthood. With training and support, these teens and young adults will frame the vision of what could and should be.

 

Improvements in Action

Currently, the CHANGE board consists of 14 active youth leaders working in partnership with 40 involved Adult Allies. The CHANGE board members continue to meet regularly to develop not only their own skills as leaders, but also the framework for a successful transition roadmap. Their goal is to create an interactive transition road map, or decision tree, that will guide parents and caregivers, involve patients in shared-decision making, and nurture both patient independence and health. In addition, printed materials, videos, patient and caregiver checklists, visit scripts, and training workshops will be developed to help ease the transition.

 

Results – In Progress

CHANGE board members continue to develop a youth-driven plan for a better transition process. The youth board has coordinated workshops, presented at local events, planned and participated in leadership retreats, initiated social activities and produced written materials and video vignettes focused on educating a larger audience about transition. The goal is to develop the tools needed to empower all youth to take greater ownership in their personal health care.

In addition to these results, CHANGE youth leaders have demonstrated maturity and growth as they’ve learned to think strategically and act professionally in order to accomplish a shared goal. Moving forward, board members will continue to develop their own skills as they develop additional printed materials, videos, patient and caregiver checklists and training workshops to facilitate a better health care process for all young people facing transition.