Adolescents with chronic conditions face challenges and risks as they emerge from pediatric rheumatology care

Living with severe inflammatory arthritis or other serious diseases of the joints, bones and muscles is challenging for everyone, perhaps most of all for children. Young patients often experience pain, swelling and stiffness in many joints, which can limit their daily activities.

Children and adolescents with chronic medical conditions, particularly those caused by autoimmune diseases such as inflammatory arthritis, face unique challenges as they struggle through school and youth, which are difficult enough as it is.

But a special and most unfortunate 18th birthday present awaits these patients as they transition from the world of pediatrics to the adult system.

Suddenly they are entering a much, much larger pool of patients, spanning multiple generations, from young people like themselves to very old people. It’s a system that generally affects everyone the same way.

Aging from pediatric care

In pediatric care, patients with serious chronic conditions are wrapped in nursing shifts. Specialists for the treatment and care of young people work in team settings with related forms of care such as nursing support, physiotherapy and specialists for child life – all with the direct involvement of the parents.

At 18, when these patients exit the pediatric system, the scaffolding it provides falls away, leaving them—suddenly and without the involvement of their parents—to navigate an underserved adult system.

Both Dr. Both Garner (an adult rheumatologist) and I (a pediatric rheumatologist) have experience caring for adolescents with chronic rheumatic diseases and work in transition clinics to help these patients complete a smooth transition. Together with the Canadian Rheumatology Association’s Transition Working Group, we recently wrote a white paper on the problems this transition can cause. We’ve also included our suggestions for improving the experience and related outcomes.

A vulnerable time of life

The changeover takes place in a particularly vulnerable phase of life, in which these patients also go through so many other major changes, e.g.

It’s a time of life when many also lose their parents’ health insurance. This can make medication difficult to access, increasing the likelihood that they will simply stop taking it and become vulnerable to serious complications.

It is also a developmental stage where mental health is a particular concern, particularly for young patients, as rates of anxiety and depression are already elevated in those with chronic illnesses.

On the clinical side of the equation, young adult patients require, on average, more time than patients who have lived longer with their chronic illnesses. They also come with more non-medical issues such as psychosocial, educational, and professional needs. Many adult rheumatologists find that the non-medical side of their care is best handled by GPs, but the reality is that GPs may not have much time either.

Mental health care and other supports are available to young adult patients, but on a more a la carte basis and often with long waits. Entering the crowded, resource-constrained environment of adult care is precisely when young patients may need this support most.

Challenges for rheumatologists and patients

To make matters worse, adult rheumatologists are not specifically trained and may not have experience with young patients coming from the pediatric system. They need to understand more about the adolescent brain, its maturity and the way it can shape the perception and behavior of young patients.

It may not be easy to ask younger patients about specific issues such as alcohol use, recreational drugs, or sexual activity. It can also be difficult to find out if these patients are taking their medication as prescribed.

Some of the harsh realities of the transition into adult care are not easy or quick to fix, but more can be done to prepare pediatric patients for the transition. This includes strengthening their self-management and self-advocacy skills and raising awareness of how things will change once they enter the adult healthcare system.

Some transition programs are excellent, but this is far from universal, especially outside of large cities where children’s hospitals are common. In some areas, support may not be available at all.

The transition from pediatric care should not end with the first visit to an adult rheumatologist. More supports are also needed on the adult side to make the transitions more durable.

Taking responsibility for adults is hard. Living with arthritis and its constellation of related diseases is more difficult. It’s not fair to expect teenagers to have to face both independently in the adult healthcare system.