Presenter: AYA Youth Transition Summit Follow-up
Katrina Jensen and Stephanie Sund from Intermountain Children’s Health
Along with the diabetes outpatient clinic, Katrina and Stephanie have worked for 3 years on the pilot GRAD program with young adults with Type 1 diabetes: 200 total participants, 100 in each group (one control, other GRAD, all from Primary Children’s, and parents were included). The GRAD transition program looks for long-term outcomes, monitoring, A1Cs, education, for ages 16-20. All done electronically. Finishing up the pilot, they have compiled the results, including the pearls, and are submitting for publication soon. Learned it was really hard; diabetes is a very intense condition with daily life and death implications, and this age group is tough. Must stay flexible and meet the kids where they are. Stephanie said there would be a list of 30 doctors, and she would help families/patients figure what insurance they take, whether they are seeing new patients, and the coding and billing for transition. (The GRAD program presented at the Adolescent and Young Adult Transition Summit Nov 20
Following the AYA Transition Summit, Katrina and Stephanie have support to continue this work in a condition-agnostic way, and are hoping to connect to other clinics. They will be meeting with everyone who registered for the Summit, asking: what are you doing around transition, do you have a checklist? Follow-up? What works, what doesn’t. They acknowledged the importance of involving families. So far have met with Hematology, CF clinics, and now UCCCN. With the Transition project, they are anticipating that Katrina and Stephanie will become a kind of consultation service – not just for Intermountain, either. Motivational interviewing and coaching. Learned some nuances (parents, technology, absence, flexible timing).
Culture change—don’t wait until the young person is 17, 18. Start at age 12 or 14. One care coordinator also a parent, can see this from both sides and it’s hard even with what she knows. Don’t forget about siblings of the young adult with special needs, and their need to transition to an adult doc, too. Insurance can cover kids up to 26 years. A big part is education about the differences between adult and peds, there will be emotions involved. (Parents can be harder to handle in the transitions than the young person!) For example: with the Type 1 diabetes patients, endocrinology visit can be anxiety-inducing, patient feels like they’re being graded; rebellion, denial. A1C’s. Distrust between pediatrics and adult providers, and a difference in cultures. Intermountain had a meet-and-greet with internal medicine, endocrinologists, med-peds, and very few adult providers showed up, those who did were distrustful. Patients really need a medical home, a PCP. Parents and patients can’t always rely on technology for blood glucose levels, too. And the technology is changing so fast. Younger providers are more tech savvy.
Chuck: consider talking about transition to adult care around the same time as school transitions: junior high, high school. Touch points – start lengthening the proverbial rope
Eric: integrate educational / vocational services with medical transition pieces. Involve school nurse? A care coordinator? Help address the medical side of things at the IEP meeting, perhaps. (Per a recent Coordinating Council for People with Disabilities meeting.)
Jan: care managers get the gap, parents can ask care managers about voc rehab.
Pat: barriers between U of U and Primary Children’s are barriers to children. Parents don’t understand that insurance covers both sets of providers. Need better communication between providers, particularly the big systems.
What would people like to see at the next Summit meeting (next November)? Next steps: forming a council, and Dr. Patience White of
will be consulting on the project. The Medical Home Portal may be the place for information on the project. Dr. Giardino is very supportive. There will be a meeting at the end of January between Carolyn Reynolds and Dr. Giardino; Katrina and Stephanie will come back and update us.
Pat is encountering
(in Cancer Care and other clinics), who deal with the contractual side, from the clinic’s office setting. When seeking an adult provider (in network), the non-licensed assistant/navigator does resources, assists the care coordinator. Not in every location. May also be called a “coach” or care manager assistant. SelectHealth will be changing some things in January for a pilot:
which include a non-licensed intake specialist. Maybe a navigator could work with the Transition group.
For next annual Transition meeting: focus on primary care (vs. specialty) and how the two can better work together. (Chuck)