Brigham & Women’s Hospital, Children’s Hospital Boston and Harvard Medical School

 Why are we doing this?  Introductions  Agenda

 2:00-2:10 pmWelcome to Boston  2:10-2:30 pmEducation Initiatives (Niraj Sharma, Kitty O’Hare, Zadok Sacks)  2:30-2:45 pmPatient/Provider Surveys (Laurie Fishman)  2:45-3:15 pmPolicy (Rich Antonelli)  3:15-3:45 pmOutcomes Research (Greg Sawicki, Kate Garvey  3:45-4:00 pmBreak for Refreshments  4:00-4:30 pmClinical Programs (Mike Landzberg, Peter Nigrovic)  4:30-4:50 pmPatient/Family Experience with Transition (the McEntee family)  4:50-5:00 pmWrap Up  5:00-7:00 pmInformal happy hour at The Squealing Pig

Supporting Health Care Transitions from Pediatric to Adult Care — Opening Doors to a Healthy Future The National Health Care Transition Center – Got Transition W. Carl Cooley, MD Got Transition – Co-Director Chief Medical Officer, Crotched Mountain Foundation Adjunct Professor of Pediatrics Dartmouth Medical School

Health Care Transition Overview  Every year 500,000+ American youth with special health care needs leave the pediatric health care system and “graduate” into the adult system  Some are able to independently negotiate their way into and around the adult health care system…  But many need different levels of support as they navigate the chasm between pediatric and adult health care

Level 1 (Basic)Level 2 (Responsive) (Includes Level 1) Level 3 (Proactive) (Levels 1 & 2) Level 4 (Comprehensive) (Includes Levels 1, 2, 3) Transition support and services vary among practice providers; staff members are informally aware of these supports and services; families/youth are informed of their individual clinician’s approach to transition as the youth’s needs arise. There is a uniform, but not necessarily written, transition and transfer of care policy that is agreed upon by all providers and is made clear to staff; families/youth are informed of the office transition policy by age 18 and/or in response to inquiries prior to age 18. A written transition and transfer of care policy addresses age of transition to adult model of care and (if necessary) age range for transfer to adult health care settings; the policy and its rationale are communicated to families/youth by age 12 during encounters and through brochures, posters, and website content In addition to Level 3, the written health care transition and transfer of care policy addresses preparation, planning, process for transition to an adult model of care and (if needed) transfer to adult health care settings. By age 18, guardianship, decision- making, and information access rights are determined and clearly identified in the medical record. Practice services include transition encounters, care coordination, & monitoring of steps/progress. Transition Index: 1. Office health care transition policy: Level – Partial or Complete

Six Core Elements of Health Care Transition 1 Transition Policy Posted Staff /Family/CY Informed 4 Transition Planning Health Care Transition Plan Portable Medical Summary 2 Transitioning Youth Registry Identify: 12-17, 18-21, Transition & Transfer of Care Transfer Checklist, EHR Summary Med. Record 3 Transition Preparation Teach & Track Skills 6 Transition Completion 3 mos. Post/FU

Health Care Transition clinical report  Targets all youth  Algorithmic structure provides logical framework ◦ Branching for youth with special health care needs ◦ Provides framework for future condition or specialty specific applications  Explicit guidance about practice structure and process beginning at the 12 year check-up  Extends through the transfer of care to an adult medical home and adult specialists

Health Care Transition Milestones  Age 12 - Youth and family aware of the practice’s health care transition and transfer policy  Age 14 – Health Care Transition plan initiated  Age 16 – Youth and parental expectations and preferences regarding adult health care  Age 18 – Transition to adult model of care ◦ (if appropriate for cognitive ability)  Age 18 – 22 – Transfer of care to adult medical home and specialists

 Kitty O’Hare, MD ◦ Interdisciplinary Hospital Conference  Niraj Sharma, MD, MPH ◦ Medical Student Education ◦ Resident Education  Zadok Sacks, MD ◦ Resident Cross Over Curriculum

 Multidisciplinary interest group, includes trainees  A different department or community group presents each month  Opportunity for Pediatrics and Adult Medicine to network

Primary Care (IM, Peds, Family Medicine)MGH Adult Congenital Heart Program Hospitalist MedicineCenter for Adults w/ Ped. Rheum. Illness Adolescent MedicineCommunity HIV Program GynecologyCancer Survivorship Program Emergency MedicineBone Marrow Transplant Thalassemia ProgramPhysical Therapy/Occupational Therapy Sickle Cell Disease ProgramGeneral Surgery Hemophilia ProgramPICU Boston Adult Congenital Heart ProgramOtorhinolaryngology Cystic FibrosisOrthopedics EndocrinologyPain Service NeurologyNeurosurgery Adult Autism ProgramHemodialysis Down Syndrome ProgramMyelodysplasia Program Complex Care ServiceCenter for Families Developmental MedicineParent Advisory Board Child PsychiatryInstitute for Community Inclusion Inflammatory Bowel DiseaseMedia Center Over 36 programs and Over 140 individuals on distribution list

 25 responded to first survey (18% of listserv)  15 non-physicians ◦ 14 based in pediatrics ◦ 1 public health student  10 physicians ◦ 5 pediatric specialists ◦ 2 adult specialists ◦ 1 combined specialist ◦ 2 combined primary care  11 identified new collaborators as a result of the conference  9 reported changing practice as a result of the conference

 “Open and collaborative with many kinds of providers, not just MDs.”  “There were a lot of doctors in attendance who were willing to recognize transition as an issue.”  “(I have a) better understanding of challenges facing patients and families during transition phase.”  “I have become more proactive about transition counseling.”  “I am more aware of those interested in transition from other institutions.”  “(I) amended my transitions preparation in clinic."

YesNo My department/division has a formal written transition policy 519 My clinical area provides social work or case management support for transition 177 Patients in my clinical area transition to adult care with a portable medical summary 913 Patients in my clinical area are prepared for the transition to adult care 1210

 Expand the reach of the conference to include more community partners as well as other academic centers in Southern New England  Expand the scope of the conference to facilitate policy changes at participating institutions  Create an internet-based platform for sharing research initiatives and continuing discussion  More patient and family participation  Involve administration

 Medical Student Education ◦ 51 third-year Harvard Medical Students ◦ Case Based Methodology ◦ Patient interview

 Internal Medicine Resident Education ◦ Learn best from patients ◦ Small group discussions ◦ Video taped patient interviews

 Med-Peds Resident Primary Care Education ◦ Case based ◦ 11 resident pilot ◦ 5 modules  Transition Tools  Sexuality  Guardianship/Siblings/End of Life  SSI/Insurance/Financial Planning  Education/Vocation/Housing