“Transition” is a word that seems to be on everyone’s lips these days, specifically relating to the transition of the 18-year-old pediatric patient to the world of adult care. For most patients, it’s not only a move to a world they’ve never seen before, it’s also a move to an approach to health care that they likely haven’t even considered. Pediatric care is by nature family-centred, and there are lots of guides along the way, from pediatricians, to specialists, to parents. The world of adult care is, by and large, another animal altogether. And whether they’re prepared for it or not, when kids turn 18, they’re on their own.
“In North America it’s kind of the new frontier,” says Dr. Robert Issenman of the issues surrounding that transition. Head of the Division of Gastroenterology, Issenman notes, “The adult model is very much disease-based and crisis-based, which is different than the pediatric model. Pediatric care generally is much more comprehensive, patient-centred, and is often very effective. But something happens when these individuals go into an adult environment with chronic diseases.”
“So the issues are, (a) Is there a way to prepare adolescents for that environment?; (b) Are there lessons that you can learn that would apply?; and (c) Is the population of 18- to 27-year-olds actually vulnerable? and Do they therefore need an intermediate level of service that’s not available to the general public?” Issenman suggests that the answer to all of these questions is an emphatic “yes.” With more than 3,000 visits each year, his team sees a range of patients with chronic illness, including Crohn’s disease and IBF, for whom ongoing uninterrupted care is essential to their overall health. More often than not, however, significant disruptions occur.
“Kids, teenagers in particular, are experiential learners, and one of the ways they learn that they should be taking their transplant anti-rejection medicine [for example] is to stop taking it, which happens about 40 to 50 per cent of the time. And then they learn to take their medicine,” says Issenman.
Alarming? It really is. Each year the gastroenterology division sees patients with very complex health profiles, many of whom they have followed intensely for a number of years. Then, the patients turn 18, and they are unprepared, unable or — as is perhaps most often the case, for a host of reasons — unwilling to maintain their care.
“One of the things I think we’re appreciating,” says Issenman, “is, in fact, the therapies we have available are very, very effective. The factor X is that people stop taking their medication and stop seeing the doctor.”
Some of the stereotypes apply — men, for example, experience a much larger abandonment rate from clinical care than do women — though it’s a problem that is seen consistently, and experienced in one form or another, by a majority of the divisions within the department. Interest in transition relates not only to continuity of care, but also to the spike in illness that is seen just after the transition to adult care, a spike which is often impressive, if not individually, then statistically across the population.
As with so many things, there are no easy solutions. “Certainly by empowering them, educating them, that’s one way [to solve the problem], but you’re not going to change the basic nature of adolescence,” says Issenman. And that’s why he’s a proponent of looking at that second tier of health care, from age 18 to age 27.