It was Monday morning. I was feeling optimistic about the coming week. Of course, there would be some unforeseen challenges—there always are— but nothing that I wasn’t feeling ready for.
But then I opened up my inbox and was immediately disheartened. There was a message sent on Sunday night about JC, an 18-year-old patient of mine who had just left home for his first year of college and was suffering what sounded like a pretty significant juvenile idiopathic arthritis (JIA) flare of multiple joints. This came as a bit of a surprise as his disease was under good control at his last visit. Adding to my dismay was that the information about this flare wasn’t coming from JC but instead from his mom. She was worried. And so was I.
JC had been our patient for approximately 14 years. He was accompanied by one or both of his parents at every visit, and decisions about his care were typically made collaboratively amongst all of us. But as JC’s freshman year of college approached, it was time for that dynamic to change. We spent what we thought was a considerable amount of time talking to JC about the importance of having him take the lead in his care. While JC didn’t seem eager to take this on this responsibility, he agreed to do so. It wasn’t that we wanted to cut out his parents entirely from helping to manage his JIA, we just wanted to help JC take ownership of his care, shifting the responsibility.
At his final in-person visit, we discussed how JC could reach our office with any questions and concerns he was having. It seemed like everything was in place. But on this Monday morning, reading this message about JC’s struggles with his disease, it was clear that JC’s mom was having a hard time letting go, and JC was struggling to take over his new responsibility. It was, of course, understandable. Mom was worried about her son and his disease, and also worried that JC wasn’t going to reach out to us on his own.
It is unquestionably difficult to be a young adult, especially when you are starting your college education/career with the additional stress of a chronic condition. It’s also difficult to be a parent, worried about when and if there will be a flare and how your child will handle it. I felt as if I had let both JC and his mother down by not preparing them as well as I should have.
For many, this may sound like a familiar scenario. As a patient, a parent, and/or a healthcare provider, we have likely all experienced some of the successes but also faced some of the challenges that often accompany the transition from pediatric to adult healthcare, from “Ask mom and dad” to “It’s up to me.” Adolescents and young adults are a unique and challenging cohort of patients to deal with.
“In pediatric rheumatology, we spend a lot of time seeing our patients grow and mature. It can be hard to transition our patients to adult practices, for both the family and ourselves.”
Preparing them to be responsible for their own healthcare and take charge of managing their disease is challenging. These are a number of barriers that have been identified that can impact the successful healthcare transition from adolescence to young adulthood, including the following:1
- Access to providers and health insurance
- Beliefs and expectations of the patient, parents, and provider
- Family relationships and dynamics
- Lack of knowledge of the patient about their condition
- Lack of knowledge of the adult provider on ways to work with adolescents and young adults
Aside from making everyone’s life more pleasant, why is the transition of healthcare responsibilities so important? For starters, a majority of adolescents and young adult patients have clinically active disease at the time of transition.1 In one study, 80% of 17-year-olds with JIA had clinically active disease, putting them at risk of poor disease outcomes.2 So then how can we successfully avoid situations like JC’s where we think we’ve done everything right only to see it all unravel? It’s not easy. The transition from pediatric to adult care needs to be carefully and purposefully planned out prior to implementation.3 Unfortunately, many young adults have little guidance to help show them how to assume responsibility for their own care.1 There are some published standards we can lead on. The National Alliance to Advance Adolescent Health has identified six core elements of a successful healthcare transition. Providers can use these core elements to set up their own plan to assist with the successful transition of their pediatric patients to adult care.4
1. Have a transition policy
This might be a starting point or, in some instances, a sticking point. But by having a policy in place, you can educate both families and healthcare professionals about the transition process and set expectations.
2. Have a process for monitoring progress
It’s important to be able to track a patient’s progress and identify areas for improvement both for the patient and the healthcare team.
3. Start earlier rather than later
The National Alliance to Advance Adolescent Health recommends starting transition readiness at age 14. While this may seem young to many parents, it can help set the foundation to build upon throughout the years, creating a transition process and not a transition event.
4. Plan, plan, plan
Children and young adults who begin their care with pediatric providers typically have treatment decisions made and managed by their parents. Once patients turn 18 years of age, they are legally responsible for their own decisions. However, because it’s a new role for them, the transition frequently creates unnecessary stress and communication breaks down in frustration.
Developing a comprehensive, thoughtful plan with both the patient and parent that includes specific milestones can help prepare all parties.
5. Follow through on the transition of care
It’s like riding a bike—your patient may need a little push at the beginning, but they will hopefully soon get the hang of it. Make a referral to an adult rheumatologist and help the patient with scheduling the first appointment, making sure they have the number in the event they need to reschedule. It’s also important to make sure the new provider has all of the records and history they need, including a transition summary. This can include important information such as current and past medications, uveitis history, positive serologies, and organ involvement.
6. Celebrate a successful transfer
This is a great time for ongoing collaboration between pediatric and adult providers to offer each other ongoing support. Remember that you are transitioning the patient to a new practice, not dumping them and washing your hands of any responsibility. Adult providers need to work hard to ensure that they integrate the young adult into their practice, and they may need some ongoing help. You are the one that knows your patient the best. In pediatric rheumatology, we spend a lot of time seeing our patients grow and mature. It can be hard to transition our patients to adult practices, for both the family and ourselves. Nonetheless, it is incumbent upon us to do the best we can to prepare all of our young adult patients for a successful transition and emergence into the world of independent, adult health decisions. These are patients who can easily fall through the cracks and be lost to high-quality care until there is an emergent situation. That isn’t good for anyone—not for the patient, not for the parents, and not for the provider. By creating a solid plan that everyone agrees upon, we can give our maturing patients the best chance at success. It not our goal to leave parents out. We work together as a team, setting up the best possible course for the patient. It is important for us to remember that each family and situation is unique. For JC, it took some extra time to help both him and his mom through care transition. Looking back, if we had started sooner, setting up clear expectations and reiterating them throughout his ongoing care, the transition process may have been easier for everyone involved.
1. Ardoin SP. Transitions in rheumatic disease: Pediatric to adult care. Pediatr Clin North Am. 2018;65(4):867-883.
2. Bingham CA, Scalzi L, Groh B, Boehmer S, Banks S. An assessment of variables affecting transition readiness in pediatric rheumatology patients. Pediatr Rheumatol Online J. 2015;13(1):42.
3. Sabbagh S, Ronis T, White PH. Pediatric rheumatology: addressing the transition to adult-orientated health care. Open Access Rheumatol. 2018;10:83-95.
4. Got Transition/Center for Health Care Transition Improvement. Got Transition – Health Care Providers. Available at www.gottransition.org/providers/ index.cfm. Accessed June 23, 2020.
AUTHOR PROFILE: Carolyn Zic, MSN, FNP-BC works as a rheumatology nurse practitioner at Comer Children’s Hospital at the University of Chicago Medicine, and is the treasurer for the Rheumatology Nurses Society Board of Directors
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