The Nervousness of the New Patient

As an adult rheumatology nurse with nearly 15 years in the field, I have a certain comfort level when educating patients who have been newly diagnosed with rheumatoid arthritis (RA).

I get a lot of the same questions over and over—“Will I be deformed?” or “Will I end up in a wheelchair?” or “What will these medications do to me?”—once patients receive their formal diagnosis. I’m comfortable and confident in how I respond to these questions in a manner that usually leaves patients feeling less distressed about their long-term prognosis.

Sometimes, though, we’re all thrown a curveball that forces us to step out of our comfort zone. This is what happened to me recently with CT, a 17-year-old female who came to us as a referral from her primary care physician. CT had sudden-onset swelling and severe joint pain in several areas that had started about 3 months prior to her appointment. Just that quickly, she had gone from a healthy high school senior ready to go off to college to being scared and anxious about her future.

The pediatric nurses among you are probably saying, “Big deal. We see this all the time!” but for an adult rheumatology nurse like me whose new, younger patients are typically in their early 20s, I don’t often encounter teenagers and their unique issues.

CT received a formal diagnosis of RA at her first visit. Given her age and absence of birth control use, our rheumatologist ruled out both methotrexate and leflunomide as treatment options, and we instead presented CT with information about adalimumab and infliximab. Because of the severity of her symptoms, we wanted to get her on treatment as soon as possible. After taking some time, CT and her mother eventually agreed to start with infliximab infusions since CT feared that she would not be able to use a self-injector due to a fear of needles. While we waited for insurance approval and openings in the infusion schedule, we gave CT a prednisone taper to help calm her symptoms.

This all happened on a Friday. I came into the office on a Monday with a message from CT’s mother asking me to call her back. According to the message, CT and her family had taken the weekend to better digest all of the information we had provided to them, and CT’s mother now had some further questions for me. As a parent of two young girls, I can only imagine how difficult it would be to process information about the diagnosis and treatment of a chronic disease like RA overnight. And so, knowing this would not be a quick and easy conversation, I waited until the end of the day when I could give this my undivided attention to return the call.

CT’s mother initially had questions about what really happens in a patient with RA, what to expect with treatment, and other general topics. I reassured her that there were many RA patients who were able to live independently on a college campus with the disease. The conversation then shifted back to the initial decision about treatment—after further consideration, CT’s family had decided that, despite serious reticence with needles, an injectable would be a better choice considering her college plans. After a subsequent discussion with my rheumatologist, we decided to start CT on golimumab rather than adalimumab due to the less frequent need for injections (once monthly vs. Q2W).

I scheduled a nursing visit with CT and her mom so that I could educate them more about golimumab, show CT how she would need to self-inject the medication, and answer any further questions they had. I don’t often have time for an in-person consultation like this—a lot of my initial education for newly-diagnosed patients is done over the phone—but I felt like this was a unique case that perhaps triggered my maternal instincts. I wanted to make sure that CT and her mother had time to think about the questions they needed to have answered and to give them confidence with the self-injection process.

By the time of the appointment, the prednisone taper was beginning to have beneficial effects, giving CT hope that she would soon be able to return to her normal lifestyle. I gave CT instructions on the self-injection process, but I could tell she was extremely nervous. Her mother held CT’s hand tightly when I handed her the autoinjector, but two clicks later, it was all over! CT beamed with pride and relief, being much more secure in her ability to do this on her own in the future.

While I would never have admitted as much in our office, I think I was more nervous than anyone that day. This was a teenage girl who just wanted to be a normal high school senior and go off to college like all of her friends. While it’s almost second nature—although still challenging—for me to talk to newly-diagnosed adults about their disease and treatment options, I have minimal experience with teenaged patients. Stepping out of my comfort zone was certainly nerve wracking, but with the success of our interaction behind me, it’s given me confidence for the future. As nurses, we should all strive to learn something new about ourselves from time to time and challenge ourselves to improve our capabilities. You never know when a patient like CT is going to walk through the door.

Carrie Beach BSN, RN-BC, is a rheumatology nurse with the Columbus Arthritis Center in Columbus, OH, and the current Historian for the Rheumatology Nurses Society. She graduated with honors from The Ohio State University College of Nursing in 2003. A dedicated patient advocate, Carrie has a passion for serving those with rheumatologic diseases and ensuring that they receive the best care possible.