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

School

Why are we doing this? Introductions Agenda

2:00-2:10 pm Welcome to Boston 2:10-2:30 pm Education Initiatives (Niraj Sharma, Kitty

O’Hare, Zadok Sacks) 2:30-2:45 pm Patient/Provider Surveys (Laurie Fishman) 2:45-3:15 pm Policy (Rich Antonelli) 3:15-3:45 pm Outcomes Research (Greg Sawicki, Kate

Garvey 3:45-4:00 pm Break for Refreshments 4:00-4:30 pm Clinical Programs (Mike Landzberg, Peter

Nigrovic) 4:30-4:50 pm Patient/Family Experience with Transition

(the McEntee family) 4:50-5:00 pm Wrap Up 5:00-7:00 pm Informal happy hour at The Squealing Pig

Supporting Health Care Transitions fromPediatric to Adult Care — Opening Doors to a Healthy Future

The National Health Care Transition Center – Got Transition

W. Carl Cooley, MDGot Transition – Co-DirectorChief Medical Officer, Crotched Mountain FoundationAdjunct Professor of PediatricsDartmouth Medical School

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

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, 22-26

5 Transition & Transfer of Care Transfer Checklist, EHR Summary Med. Record

3 Transition Preparation Teach & Track Skills

6 Transition Completion 3 mos. Post/FU

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

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 ProgramHospitalist Medicine Center for Adults w/ Ped. Rheum. IllnessAdolescent Medicine Community HIV ProgramGynecology Cancer Survivorship ProgramEmergency Medicine Bone Marrow TransplantThalassemia Program Physical Therapy/Occupational TherapySickle Cell Disease Program General SurgeryHemophilia Program PICUBoston Adult Congenital Heart Program OtorhinolaryngologyCystic Fibrosis OrthopedicsEndocrinology Pain ServiceNeurology NeurosurgeryAdult Autism Program HemodialysisDown Syndrome Program Myelodysplasia ProgramComplex Care Service Center for FamiliesDevelopmental Medicine Parent Advisory BoardChild Psychiatry Institute for Community InclusionInflammatory Bowel Disease Media Center

Over 36 programs and Over 140 individuals on distribution list

25 responded to first email 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."

Yes No

My department/division has a formal written transition policy

5 19

My clinical area provides social work or case management support for transition

17 7

Patients in my clinical area transition to adult care with a portable medical summary

9 13

Patients in my clinical area are prepared for the transition to adult care

12 10

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