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

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

“Boot Camp” Literature Review Observations, Needs Assessment, Expert Consultation Prototyping Model Refinement Identification of pilot sites Implementation Evaluation & Further Refinement Dissemination of Successful Models Year 1 Year 2 Beyond

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

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

Pediatrics Specialized Adult Medical Home Pediatrics Transition Clinic Adult Care Remain within the Pediatric System Transition Processes Now Pediatrics +/- Transition Preparation or Consult Adult Care

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

Transition from Pediatric to Adult Care for Young Adults With Childhood Onset Chronic Disease - Who are we talking about? Age: 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…

Connor Age: 19 Muscular Dystrophy Diana Age: 22 Cerebral Palsy Gabe Age: 17 Type I Diabetes = Costly, avoidable hospitalizations & unnecessary suffering

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

Ongoing Assessment Dial services up and down Match individual needs Real time remote check-ins Prompt responses Avoid acute crises Medical Fragility Patient Activation Psychosocial Mental Health

NP/PA 1.0 FTE* Health Coach 1.5 FTE* Navigator 4 FTEs* Bridge Team Lead & oversee the Bridge Team Organize medical care most medically fragile Provide medical back up Quality control 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 *Per 300 patients

Difficult Period Medical issues exacerbated Being a teenager is tough Mental health problems surface Caregiver fatigue   Decreased treatment adherence Mismatched Care Limited care coordination 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 Bridging The Gap Transition from Pediatric to Adult Care for Young Adults With Childhood Onset Chronic Illness B uild & Support Self-Management Technology-supported: Health coaching Treatment for anxiety & depression Peer support G uide Patients & Families Navigation services Transition checklist Personal Health Record Link to local resources Pull system to ensure stable arrival T ele-mediated specialty and care coordination support Enhance care coordination Support primary care Improve access The Patient Solutions Predicted Gains:  Clinical Outcomes  Patient & Family Experience  Spending 15% BRIDGE TEAM: Advanced Practice Providers, Navigators, Health Coaches ONGOING ASSESSMENT  Patient segmentation to dial care level up and down The System The Handoff

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 Bridging The Gap Transition from Pediatric to Adult Care for Young Adults With Childhood Onset Chronic Illness B uild & Support Self-Management Technology-supported: Health coaching Treatment for anxiety & depression Peer support G uide Patients & Families Navigation services Transition checklist Personal Health Record Link to local resources Pull system to ensure stable arrival T ele-mediated specialty and care coordination support Enhance care coordination Support primary care Improve access Solutions Predicted Gains:  Clinical Outcomes  Patient & Family Experience  Spending 15% BRIDGE TEAM: Advanced Practice Providers, Navigators, Health Coaches ONGOING ASSESSMENT  Patient segmentation to dial care level up and down The Patient The System The Handoff

Connor Age: 19 Muscular Dystrophy Diana Age: 22 Cerebral Palsy Gabe Age: 17 Type I Diabetes Remote specialist consults Online depression treatment for mother Health coach Navigator Personal Health Record Remote specialist consults Personal Health Record Care coordination Flexible appointments Peer support Ongoing mental health screening

Bridging The Gap

We welcome your thoughts! Yana Vaks Rachel Bensen