Children and adolescents with inflammatory bowel disease (IBD) are more likely to have severe and extensive disease on diagnosis and to require more-aggressive therapy than adults are. Because the disease begins earlier, there is also greater potential for long-term complications from IBD itself or from side effects of medications. The reasons for the differences in the severity of pediatric- and adult-onset IBD aren't entirely clear. But the challenges involved in treating pediatric IBD highlight the need for increased attention to and support of young patients as they make their way through the health care system.
In the literature, the term "transition" is frequently used to refer to the process whereby an adolescent shifts from a pediatric to an adult specialist. But Jeanne Tung, M.D., a pediatric gastroenterologist at Mayo Clinic's campus in Rochester, Minnesota, says there are actually two separate processes with different terminologies.
"Transitioning refers to pediatric patients learning to take over responsibility for their disease and its management from their parents," she explains. "Ideally, this should start in grade school when children begin to understand what IBD is, how and where it affects their bodies, what drugs they take and what they are meant to do. As they get older, they become more comfortable taking the lead in talking to the medical team instead of their parents. And usually by senior high school, they should be responsible for their medications, be able to refill and pick up prescriptions, and have some concept of insurance coverage."
The age at which children and adolescents assume these responsibilities will depend on their developmental maturity and readiness as well as disease activity and support systems. But encouraging self-efficacy, self-management, independence and assertiveness is critical. The research clearly shows that once young adults with chronic diseases leave home, adherence to medical therapy often lapses, leading to worsening disease activity, subsequent hospitalizations and an increased risk of surgery.
A study published in 2012 in Research Activities — a publication of the Agency for Healthcare Research and Quality — found that among young people with IBD, hospitalizations were highest for those ages 16 to 20.
Many factors have been found to account for noncompliance, including the freedoms and demands of young adulthood, a heavy pill burden, the high cost and perceived lack of benefit of medication, and social stigma. Yet studies have shown that some of these factors can be ameliorated when pediatric patients have the skills, knowledge and support needed to manage their disease.
The second rite of passage is the transfer of adolescents with IBD from pediatric to adult providers. This process is unique for each patient and, like transition, its success or failure depends on a variety of factors, including the readiness and psychological maturity of patients as well as the ability and willingness of adult gastroenterologists to treat them.
"Adult care is patient centered and focused on autonomy, whereas the pediatric team is often multidisciplinary and family centered, with the parents an integral part of the decision-making process," Dr. Tung says. "In adult care, the family's concerns may be neglected and there may not be complete recognition that an adolescent continues to develop in maturity well into young adulthood. The literature on IBD transitions and transfers shows that many adolescent patients don't even know the medications they're taking."
A small 2008 study published in Child: Care, Health and Development examined the attitudes and experiences of 22 chronically ill adolescents relative to transfer of care. Most expressed concern about establishing new relationships and bringing new providers up to speed, and most said they didn't feel ready to transfer at the time of the interview.
Not all providers are ready either — both pediatric specialists, who may be reluctant to relinquish care of a patient, and adult physicians, who may not feel comfortable managing adolescents and the parent‑child dynamic.
"Parents ask us for a referral to a good IBD adult expert, and sometimes we don't really know who to recommend. We may know a provider in the immediate area or in a large city with a well-known IBD center, but it may be more challenging if the patient moves to a smaller town or city," Dr. Tung explains. "Parents understandably want a go-to name and get very anxious when their child is a high school senior. Sometimes we can help them and sometimes we can't."
Challenges for young adults with IBD extend beyond providers, infusion centers and negotiating with insurers. Those living in a college dorm will need to navigate bathroom issues and dietary restrictions. The Americans with Disabilities Act entitles them to reasonable accommodation, and 504 plans need to be revised for the college curriculum and given to school officials. All these pieces need to be in place, Dr. Tung says, but are easily overlooked by overburdened parents and providers.
Easier transitions and transfers
Like many institutions, Mayo Clinic is trying to find ways to make the transition and transfer processes easier. Through the ImproveCareNow network, it is collaborating on a template to serve as the transfer document from the pediatric to adult gastroenterologist. The document not only highlights medical information, but also provides patients and parents an opportunity to add personal information. This includes insurance and pharmacy information, primary means of communication, and anything patients would like to say about themselves.
Mayo is also trying to expand and coordinate services.
"Several years ago, we created a scenario where patients and families in the process of transfer would meet with a social worker," Dr. Tung explains. "We identified physicians who were comfortable working with young adults and tried to find resources across multiple areas of pediatrics we could utilize. There are so many educational pieces that are not unique to IBD. The whole process can't fall on the physician. Mental health professionals, nurses, social workers — these are also key team members."
Mayo Clinic's campus in Minnesota is also participating in the work of the IBD Support Foundation, which seeks to reduce the negative psychological, social and emotional impact of the disease through a number of innovative approaches, including the development of psychosocial programs and services.
"We want to do everything we can to optimize the transition and transfer processes so families are satisfied and we feel comfortable that pediatric patients are developing autonomy. We want them to transfer in remission and stay in remission. That's the best-case scenario," Dr. Tung says.
For more information
Hospitalizations for kids with inflammatory bowel disease are frequent and costly. Research Activities. 2012;183.
Tuchman LK, et al. Transition to adult care: Experiences and expectations of adolescents with a chronic illness. Child: Care, Health and Development. 2008;34:557.