Transitioning from pediatric to adult rheumatology can be quite a traumatic experience for many patients with rheumatic disease. Some have seen their pediatric rheumatologist since their earliest days of childhood and cannot recall a year going by without a handful of visits to their office. Most have built special bonds with their team of providers who have watched them grow from toddlers into teenagers, offering guidance and a helping hand to manage the ups and downs of their disease.
While I do not often see patients until they reach their early adulthood in my current rheumatology practice, there have been a handful of times in my career when I have become involved with patients at an earlier age. Abby is the patient I always think about most.
Abby was 15 years old when she first came to our adult rheumatology practice. Since her diagnosis of juvenile idiopathic arthritis at age 4, Abby had been treated by a wonderful pediatric rheumatologist near a leading academic center for several years, but the 5-hour roundtrip drive for her busy family was becoming a growing burden. Her pediatric rheumatologist had called our practice a year before we first met Abby asking if we would be willing to take over her care. He explained that Abby was an unusually mature patient whose family was simply worn out by the long commute, and he felt an early transition to an adult practice would be the best thing for them. Despite our reluctance to take on such a young patient, we eventually agreed.
Prior to her arrival, our team reviewed Abby’s medication history and recent lab results. We were lucky to have been provided with such thorough documentation from her pediatric practice. That does not always happen.
Yet even though we thought we knew what to expect, we were completely blown away when Abby first came into our office. She was an exceptional young woman. Vibrant yet soft spoken, Abby oozed a positive attitude despite the toll her disease had taken over the years. She had contracture deformities across her entire left hand and ulnar drift of her right hand, despite technically being in clinical remission (her disease had remained stable for >2 years). Abby also had some minor bone changes in her left knee.
At the time we first met her, Abby was being treated with a regimen of weekly subcutaneous etanercept 50 mg, weekly subcutaneous methotrexate 25 mg, daily folic acid 1 mg, and daily hydroxychloroquine 200 mg daily. She was also taking oral birth control. I knew that I was going to have to take things slowly with Abby. No matter the age of the patient, going from a longtime provider to a new team can be scary. Our first discussion therefore focused on Abby’s feelings surrounding the change in providers. She admitted being nervous about suddenly having to share her life with a new team. We were grateful to her pediatric rheumatologist in that he told Abby he would still remain available as a resource if she had any urgent questions that she was uncomfortable discussing with her new team of providers.
We then started talking about the things she liked to do. Abby told me that she was currently running for class president (she won). She served on a variety of school committees. Her relationship with her parents seemed rock solid. She emphasized to me that she was not going to let her arthritis slow her down. This was all good information to hear and made me feel more comfortable knowing that this was a motivated patient who seemed to have her life in order.
Once we covered her personal history, our discussion moved into the expectations of our practice. I explained to Abby the frequency we expected to have her labs monitored, which fortunately mirrored the expectations of her pediatric practice. We set a mutual goal for her disease, which was the maintenance of disease remission.
Over the next few months and years, I continued to see Abby regularly, and our relationship matured. I saw her through her high school years and witnessed a variety of milestones, including prom, high school graduation, her college years, and then a few years ago, her wedding.
Two years ago, Abby came to me looking a little more nervous than usual. I asked her what was wrong. Was her disease flaring? Was she having problems with her personal life or job?
“No, it’s none of that,” she told me. “I’m moving.”
It always hurts a little when we “lose” a patient we’ve spent so much time with over the years, but once I got over the initial shock, I thought about all of the ways I could help Abby with her next healthcare transition. Just like her pediatric rheumatologist had done so many years ago, I gave Abby my phone number and told her to call me if she had any questions.
I talked to Abby a few months later once she was settled into her new home and had seen her new rheumatologist. Abby told me she and her husband had decided it was time to start a family, and Abby wanted to make sure the changes her rheumatologist had suggested were appropriate. Yes, I told her, he was right to stop her methotrexate. Six months later, Abby discontinued all of her medications, which is not what we typically recommend but was a personal decision she felt most comfortable with. She fortunately soon got pregnant.
I next heard from Abby 2 months into her pregnancy. Unfortunately, her disease was flaring despite intraarticular injections and a pulse of low-dose steroids. Her new rheumatologist suggested that she restart etanercept. Before agreeing to do so, Abby called me to get my thoughts. This put me in a tough situation. I did not want Abby to continue to second-guess her current provider and make her feel like she was always looking over his shoulder for my approval, but I also felt loyalty to Abby. Fortunately, it was a moot point in this circumstance, as I explained to Abby that controlling her arthritis was vital during the early stages of pregnancy and that we knew enough about the use of tumor necrosis factor inhibitors such as etanercept during pregnancy to feel comfortable with its safety. If I were still her provider, I told Abby, I would make the same recommendation as her current rheumatologist.
My hope is that Abby’s comfort level with her new provider is blossoming, just like it did with me so many years ago. I do not know how many times she called her pediatric rheumatologist after transitioning into my care—I have never asked—but her current reticence is certainly not surprising.
The transitioning of patients, whether it is from a pediatric to adult practice, or from one adult practice to another, is so important for our patients. Due to life circumstances, patients with chronic diseases often to go through a variety of healthcare stops, with every change bringing in unknown variables. While we cannot control the recommendations of the new practice, it is our job to provide the new provider team with whatever assistance we can to best serve our patients. In the case of Abby, her transition into and then out of our practice is a model I often think about when I am either about to say hello to a new patient or goodbye to an old one. We should always think about the ways in which every transition affects our patients and how we can do the best possible job to impact their future in a positive way.
AUTHOR PROFILE: Nancy Eisenberger, MSN, APRN, FNP-C, is a nurse practitioner at Arthritis, Rheumatic and Back Disease Associates in Voorhees, NJ, and a member at large on the Rheumatology Nurses Society Board of Directors.
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