Rachel Bensen, MD, MPH Dana Steidtmann, PhD Yana Vaks, MD Mentor: Arnold Milstein, MD, MPH

1. Bridging The Gap: Transition from Pediatric to Adult Care for Young Adults With Childhood Onset Chronic Disease Rachel Bensen, MD, MPH Dana Steidtmann, PhD Yana Vaks, MD Mentor: Arnold Milstein, MD, MPH

2. The Triple Aim Improving patient experience Lowering per capita costs Improving population outcomes

3. “Boot Camp” Year 1 Literature Review Observations, Needs Assessment, Expert Consultation Prototyping ModelRefinement Identification of pilot sites Implementation Year 2 Evaluation & Further Refinement Dissemination of Successful Models Beyond http://cerc.stanford.edu

4. “This is a patient safety issue” “There is no quarterback” “Patients want a life program, not a medical program” “When is it going to be my turn to talk?” “I feel like I am a burden to everyone” “Transition is so serious and so scary”

5. Consensus Statement on Transitions(2002, 2011) Purposeful, planned process that addresses the medical, psychosocial and educational/vocational needs of young people with chronic medical conditions, as they move from child-centered to adult-oriented health care system

6. Pediatrics +/- • Transition Preparation or Consult • Adult Care Transition Processes Now

7. Spikes in Health Crises Brousseau et al 2010 (JAMA) Acute Care Utilization and Rehospitalizations for Sickle Cell Disease

8. Transition from Pediatric to Adult Care for Young Adults With Childhood Onset Chronic Disease -Who are we talking about? Age: 15-25 years US: 39.2 million 5-10% (4 million) have serious chronic conditions 0.5 million young adults transition from pediatric to adult care every year 2010 US Census Data Cerebral palsy Type I Diabetes Cystic Fibrosis Congenital heart disease Transplants Rare genetic and metabolic disorders Severe asthma Spina bifida Inflammatory bowel disease Lupus Sickle Cell Disease Muscular Dystrophy and many others…

9. = Costly, avoidable hospitalizations & unnecessary suffering

10. Bridging The Gap:Transition from Pediatric to Adult Care For Young Adults with Childhood Onset Chronic Disease Build and support self-management skills Build and support self-management skills Team-up providers to match care to changing patient needs Tele-mediated specialty support Guide patients & families through service changes to avoid care laps Guide patients & families through service changes ~15% net reduction in annual per capita medical spending for target population

11. Ongoing Assessment Dial services up and down Match individual needs Real time remote check-ins Prompt responses Avoid acute crises

12. Bridge Team • Lead & oversee the Bridge Team • Organize medical care most medically fragile • Provide medical back up • Quality control *Per 300 patients • 1-to-1 coaching to motivate and build skills for self management of illness • Orient to device based self tracking tools • Support during high risk periods • Mentorship • Point-of-contact during transition • Assess risk factors to match to relevant resources • Transition readiness checklist • Outreach during high risk periods • Educate on what to expect during transition • Mentorship

13. Bridging The Gap Transition from Pediatric to Adult Care for Young Adults With Childhood Onset Chronic Illness The System The Handoff The Patient • Difficult Period • Medical issues exacerbated • Being a teenager is tough • Mental health problems surface • Caregiver fatigue •  • Decreased treatment adherence • The Gap • Complex systems are hard to maneuver • Fear of the unknown • Service changes • Lack of system interoperability •  • Lapses in care and unnecessary tests • Mismatched Care • Limited care coordination • Gaps in knowledge & support • Not suited to busy patient lifestyles •  • Avoidable hospitalization • and increased ER use Challenges ONGOING ASSESSMENT  Patient segmentation to dial care level up and down BRIDGE TEAM: Advanced Practice Providers, Navigators, Health Coaches • Build & Support Self-Management • Technology-supported: • Health coaching • Treatment for anxiety & depression • Peer support • Tele-mediated specialty and care coordination support • Enhance carecoordination • Support primary care • Improve access • Guide Patients & Families • Navigation services • Transition checklist • Personal Health Record • Link to local resources • Pull system to ensure stable arrival Solutions Predicted Gains:Clinical OutcomesPatient & Family ExperienceSpending 15%

14. Bridging The Gap Transition from Pediatric to Adult Care for Young Adults With Childhood Onset Chronic Illness The Handoff The Patient The System • Difficult Period • Medical issues exacerbated • Being a teenager is tough • Mental health problems surface • Caregiver fatigue •  • Decreased treatment adherence • Mismatched Care • Limited care coordination capability • Gaps in knowledge & support • Not suited to busy patient lifestyles •  • Avoidable hospitalization • and increased ER use • The Gap • Complex systems are hard to maneuver • Fear of the unknown • Service changes • Lack of system interoperability •  • Lapses in care and unnecessary tests Challenges ONGOING ASSESSMENT  Patient segmentation to dial care level up and down BRIDGE TEAM: Advanced Practice Providers, Navigators, Health Coaches • Build & Support Self-Management • Technology-supported: • Health coaching • Treatment for anxiety & depression • Peer support • Tele-mediated specialty and care coordination support • Enhance carecoordination • Support primary care • Improve access • Guide Patients & Families • Navigation services • Transition checklist • Personal Health Record • Link to local resources • Pull system to ensure stable arrival Solutions Predicted Gains:Clinical OutcomesPatient & Family ExperienceSpending 15%

15. Navigator • Navigator • Navigator • Personal Health Record • Personal Health Record • Personal Health Record • Health coach • Remote specialist consults • Remote specialist consults • Flexible appointments • Online depression treatment for mother • Peer support • Ongoing mental health screening • Care coordination

16. Bridging The Gap

17. We welcome your thoughts! Yana Vaks yvaks@stanford.edu Rachel Bensen rbensen@stanford.edu