Posted by Whitney Sunseri on April 09, 2019
Transition of care is a hot topic in our Pediatric Gastroenterology division. We have many patients with lifelong diagnoses, such as Inflammatory Bowel Disease, who will eventually need to move to adult care. In the past, transition and transfer of care have been a bit like an elephant in the room as patients near their 18th birthday. Questions are nervously broached by parents at the end of office visits: “How much longer will you see my son/daughter? Where do we go? What if we don’t want to see an adult doctor?” These encounters made our team realize that we needed to do a better job preparing patients and their parents for transition and transfer of care. The question was, where do we start?
If a patient is doing well on their current therapy, it’s likely we will only see them 2-4 times in a year. With only 30-minutes per visit - after getting through the nuts and bolts of their disease, how they are feeling, medications, labs etc. - we found we didn’t have time left to cover other topics. We knew we needed to find a way to build conversations about transition and transfer into our regular visit flow, so it wasn’t left to chance whether these important topics were discussed.
We started by proactively initiating a yearly appointment with Whitney Gray, CRNP, our wonderful Advanced Practice Provider, with the express purpose of starting to talk with our patients about taking ownership of their disease and steps they could take towards transition readiness. This is something Whitney now starts talking with patients about as early as 12 years of age.
Also, our adult GI colleagues were already hosting a yearly education seminar, which we would encourage our young adult patients to attend. It was this event that inspired us to branch out and start our own annual seminar called IBD GROW (Goals of transition Readiness, encouraging Ownership and sharing Wisdom). For our inaugural IBD GROW event, we invited all our patients with IBD ages 14 and older to attend with their families, friends or/or significant others for an evening that included:
- Informational Presentations about:
- Diet and IBD
- Stress Management in IBD
- Adult GI Care and Expectations
- Icebreaker activities for patients to get to know one another
- Vendor information tables
- Patient panel discussion
- And, of course, delicious food!
I am a firm believer that knowledge is power, and I do feel for our patients it is the greatest gift we can provide them in a situation where at times they may feel powerless. This year was our first ever IBD GROW and it was a huge success. We already are looking forward to next year’s event and many more to come. – Whitney Sunseri, MD
Through our IBD GROW event, we hoped to demystify transition, ease anxiety as the age of transition approaches and help our community feel connected, prepared and supported. Our agenda for the evening, especially our special topic lectures on Diet and Stress Management, reflected what our patients and parents were expressing interest in learning more about.
We were grateful to be joined by two of our adult GI colleagues, who detailed what they expect patients to be doing now to ready themselves for transition, what transfer of care entails and what to expect in the adult GI care setting. For instance, we learned that patients can start with small tasks, such as reporting their own symptoms or reciting their medications to their doctor, instead of relying on their parents to do so during the visit. And they can graduate up to more advanced tasks, such as making their own appointments, knowing the story of their diagnosis and treatment history, and coming to appointments on their own.
Our vendors included amazing ImproveCareNow staff, pharmaceutical sales reps, and reps for IBD-focused summer camps in the area. Again, by sharing this information we hoped to encourage our patients to get involved in their community and take ownership of their disease and their treatment options.
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