Living with severe inflammatory arthritis or any other serious condition of the joints, bones and muscles is challenging for anyone, perhaps especially for children. Young patients often experience pain, swelling and stiffness in many joints, which can limit their daily activities.
Children and adolescents with chronic conditions, especially those caused by autoimmune disorders such as inflammatory arthritis, face special challenges as they navigate school and adolescence with pain, which is already difficult enough.
But a special and very unfortunate form of 18th birthday present awaits these patients as they transition from the world of pediatric care into the adult system.
They suddenly enter a much larger patient pool that spans several generations, from young people like themselves to the very old. It’s a system that generally treats them all the same way.
Aging outside of pediatric care
Under pediatric care, patients with serious chronic illnesses are wrapped in layers of care. Specialist medical specialists to treat and support young people work in teams that also include related forms of care such as nursing support, physiotherapy and child life specialists, all with direct involvement of parents.
Unlike the adult care system, pediatric rheumatology wraps patients in layers of care. (Shutterstock)
However, at age 18, when these patients age out of the pediatric system, the scaffolding it provides falls away, leaving them to navigate, suddenly and without the involvement of their parents, an under-resourced adult system.
Both Dr. Garner (adult rheumatologist) and I (pediatric rheumatologist) have experience in following young people with chronic rheumatic diseases and work in transition clinics to help these patients complete a smooth transition. With the Transition Task Force of the Canadian Rheumatology Association, we recently wrote a white paper on the problems this transition can cause. We’ve also included our suggestions on how to improve the experience and associated results.
A vulnerable moment in life
The change occurs at a particularly vulnerable time in life, when these patients are also going through many other important changes, such as entering college or university, living independently, dating and having relationships, and making decisions about drinking and recreational drugs
It’s a time in life when many also lose their parents’ health benefits coverage. This can make it more difficult to access the medication, increasing the chance that they will simply stop taking it and become vulnerable to serious complications.
It’s also a stage of development where mental health is a particular concern, even more so for young patients because rates of anxiety and depression are already high among people with chronic illnesses.
Young people must navigate the crowded and under-resourced environment of adult care. (Shutterstock)
On the clinical side of the equation, young adult patients need more time on average than patients who have lived longer with their chronic illnesses. They also have more non-medical issues, such as psychosocial, educational and vocational needs. Many adult rheumatologists feel that family physicians are better at handling the non-medical part of their care, but the reality is that family physicians may not have much time either.
Mental health care and other supports are available to young adult patients, but in a more ad-hoc model and often with long waits. As they enter the more crowded and under-resourced environment of adult care, this is precisely the time when young patients may need these supports most.
Challenges for rheumatologists and patients
Complicating matters further, adult rheumatologists are not specifically trained for and may not have experience with young patients coming out of the pediatric system. They need to understand more about the adolescent brain, its maturity, and how it can shape the perceptions and behaviors of young patients.
It may not be easy to ask younger patients about certain topics such as drinking, recreational drugs, or sexual activity. It can also be difficult to determine whether these patients are taking their medications as prescribed.
Some of the harsh realities of transitioning to adult care are beyond easy or quick fixes, but we can do more to prepare pediatric patients for the transition. This includes strengthening their self-management and self-advocacy skills and increasing their awareness of how things will change when they enter the adult health care system.
Some transition programs are excellent, but this is far from universally true, especially outside of large cities that often have children’s hospitals. In some areas, no support may be available.
The transition from pediatric care does not have to end with the first visit to an adult rheumatologist. More supports are also needed on the adult side to make transitions last longer.
Taking on adult responsibilities is difficult. Living with arthritis and its constellation of related conditions is harder. It is not fair to expect adolescents to deal with both independently in the adult health care system.