Making the Transition to Adulthood After Childhood Illness

Thankfully, with advances to medical treatments, more and more youth who face a chronic illness during childhood will transition into young adulthood. As many of us can remember, this is a difficult time that is likely far more complicated when doing so with a special health care need. I will never forget many years ago when I first started practicing in this area meeting a young woman who had survived childhood cancer and, after years of feeling no different than her peers, suddenly felt incredibly anxious and depressed about her future. This time may be especially challenging because of cognitively coming to grips with the ramifications of one’s illness as well as the perhaps foreboding nature of the adult health care system.

The picture became more frightening as my group and others conducted studies showing that youth who transition to the adult health care system experience increased mortality (Annunziato et al., 2007). We specifically found that among transplant recipients, adherence to medications decreased once patients left pediatrics. Although the reasons for this are unclear, patient perspectives suggest that there can be a sense of feeling lost during transfer. Frustratingly, the literature does not offer many evidence-based ideas for improving this process. To a great extent, this reflects the complexity of the problem. It is very difficult to construct and test ideas that take into account issues in both pediatrics (e.g., maybe patients are not well-prepared to transfers) and the adult side (e.g., maybe clinicians are not attuned to the needs of these younger patients).

One possible approach that has been proposed is the utilization of a transition coordinator (TC). This role could be someone from a variety of disciplines who intervenes in both places as well as during the actual shift in service location. Another “bigger” solution is the creation of transition clinics; however, with this comes substantial costs. Therefore, at our site, we thought that the simplest thing to do was create a TC position and put it to the test.

Immediately upon finding that outcomes were poor after transfer for transplant recipients at our site, we instituted the TC role (Annunziato et al., 2013). All patients were prepared by the TC before transfer and followed by her afterwards. During this time, the TC was accessible to patients by their choice of communication method (telephone, text messaging, electronic mail, or social networking) for questions, concerns, or simply to feel like someone was listening. Over 20 patients have utilized the TC and all are alive and well with overall strong adherence to their treatment regimen. What’s more, they expressed great satisfaction and comfort with this approach.

As a faculty member on a college campus, I don’t have to look very far to see that other places besides health care have already recognized the importance of smooth transitions helmed by a point person. At Fordham University, we have a Dean dedicated to the needs of the freshman class and a trained group of freshman advisors who greet and follow incoming students throughout their first year in this new setting. It seems like this sort of “guide” can make a big difference across places where difficult transitions occur.

A TC may seem like a simple way to remedy a very complex problem. But, in this day and age, it’s important, even essential, to have simple, cost-effective solutions in health care. And perhaps what matters most are the voices of the patients who were heard in this model.

Literature included:

Annunziato, R.A., Baisley, M.C., Arrato, N., Barton, C., Henderling, F., Arnon, R., & Kerkar, N. (2013). Strangers headed to a strange land? Utilization of a transition coordinator to improve transfer from pediatric to adult service. The Journal of Pediatrics, 163(6), 1628-33.

Annunziato, R.A., Emre, S., Shneider, B.L., Barton, C., Dugan, C.A., & Shemesh, E. (2007). Adherence and medical outcomes in pediatric liver transplant recipients who transition to adult services. Pediatric Transplantation, 11, 608-614.