A Mile(s) in Their Shoes

I understand that transitioning from a pediatric to an adult rheumatologist can be a very scary moment for many of our young adult patients. Often, these patients have been with their providers for many years and have built strong relationships built on trust. What these young adults don’t know is that I have a secret, too… as providers, sometimes we’re just as scared as they are!

As an adult rheumatology provider, I am always focused on learning and keeping myself up to date about every rheumatologic condition that affect adults as well as the medications that are used to treat these conditions. It’s a lot of information to keep up with, and it can be overwhelming at times, so it’s not a big surprise that I sometimes forget that these diseases can affect kids too. And sometimes, these diseases present in a very different manner than we are used to.

Heather is a longtime patient of ours that was diagnosed with erosive rheumatoid arthritis (RA) at age 34. It was a pretty classic case of adult-onset RA as she presented with synovitis and joint pain in several joints, a positive rheumatoid factor, and a family history that included both RA and systemic lupus erythematosus. During the course of her treatment, Heather responded reasonably well to several disease modifying anti-rheumatic drugs, and then eventually to biologic therapy once those were needed to help keep her disease under control. All in all, she was a pretty typical RA patient for us—no big surprises.

Over the years, Heather’s appointments were part medical and part social check-ins. We had built a great rapport and, since her condition rarely changed, we always had time to discuss our families and what our kids were up to. Years ago, Heather told me about some of the health issues her son, Miles, was experiencing when he was about 4 years old. He had recently been quite ill, requiring a feeding tube at one point, and she had been extremely worried about him. Following his recovery, he went on to develop joint pain in several different joints, which raised concerns for Heather that her son was experiencing autoimmune arthritic symptoms.

During the next 3 years as Miles started school, Heather would fill me in periodically on some of the battles she had been having with her pediatrician over her son’s symptoms. The pediatrician was, I was told, attributing Miles’ joint issues to “growing pains” that he would eventually outgrow. It was only after swelling in his left knee appeared years after these “growing pains” had first emerged that Miles was finally referred to a pediatric rheumatologist for evaluation. He was 7 years old when he was initially diagnosed with polyarticular JIA, which was later changed to enthesitis-related JIA.

I would hear from Heather on and off about Miles’ health. He had done well on infliximab for many years and was now preparing to head off to college (man, I feel old!). Heather told me that Miles was planning to continue with infliximab infusions while he was away at school, but she was concerned the current plan might not be realistic. The closest pediatric rheumatologist to Miles’ college was several hours away in a rural community. That would be hard for any patient, much less a college student. Heather asked if it would be possible to have Miles transition to our practice to take over his infusion schedule and overall care. I didn’t think twice before saying yes and quickly set up a tentative date for him to come for an initial visit during his holiday break from school.

It was more than a year later that I realized that Miles never came in for that visit. We’re all busy, and it’s not always a priority for us to follow up with patients who haven’t established their presence in our practice. Because Miles wasn’t in our electronic medical record, there was nothing reminding me that he was supposed to have come to see us. It wasn’t until an “urgent” request came into our scheduling department for a new patient visit that Miles reappeared on my radar. As with all urgent requests, I asked about the patient’s circumstances to be sure this was truly an urgent case. I was told that the patient’s mother had called in a panic because her son was about to lose his health insurance and his pediatric rheumatologist was retiring. He needed to establish himself as a new patient within our practice ASAP in order to continue with his longstanding treatment regimen. I knew right away this “urgent patient” was Miles.

Miles’ first visit was a tough one for me. Due to the urgency of his situation, we saw him before any records had arrived from his pediatric rheumatologist. And while I wasn’t expecting a 20-year-old male college student to open up and tell me his life story on the day we met, Miles truly was a man of few words! I got a few mumbles and nods from him, but not much else. Fortunately, his mom accompanied him to this visit and filled in a lot of details that were missing. I knew I couldn’t possibly immediately fill the shoes of the pediatric nurse practitioner who had managed Miles’ disease since childhood, but I was determined to slowly build up a level of trust with him and get him to open up, at least a little.

Building rapport and establishing trusting relationships with patients is always my personal goal as a rheumatology nurse. When I see new patients, I always feel confident in building that trust from the very first visit. However, when it comes to pediatric patients transitioning to an adult rheumatology practice, I am always a little timid. These were kids who had put a lot of trust in their pediatric provider, as did their parents. In addition, I am admittedly no expert in pediatric rheumatic diseases (though reading this issue of Rheumatology Nurse Practice will surely help!). After Miles’ first visit, I took a crash course on his specific pediatric diagnoses to try to figure out how those translated to adult disease and possible treatment regimens.

As more pediatric patients are diagnosed with a rheumatic disease, they will inevitably start arriving more and more frequently in adult practices as they get older. It’s not an easy transition—for us or them—so it’s important to be prepared. Learn what you can about the most common pediatric conditions. Develop a formal transition plan, with flexibility built in to account for the individualism of the patient. While these are “new patients” to us, they are not new to rheumatology, and they likely know more that we give them credit for.

AUTHOR PROFILE: Carrie Beach BSN, RN-BC, is a rheumatology nurse with the Columbus Arthritis Center in Columbus, OH, and the President-Elect of the Rheumatology Nurses Society

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