Being a new patient showing up for the first appointment at a new practice can be an unnerving experience. Will I like my doctor? Will they understand me and take my issues seriously? Will they truly be interested in helping me get better? Whenever I have to see a new provider as a patient, I always rehearse what I am going to say in my head before the visit begins. I want to make sure to give my new provider all of the pertinent details without overwhelming them with my entire life history.
Let’s face it—we all have new patients who overload us with more information than we need. It takes patience to listen nonjudgmentally. As a rheumatology nurse, I am typically the patient’s initial point of contact before they see their new doctor. I always try my best to put myself in the shoes of the new patient and let them tell me whatever they are comfortable sharing. Some will give me their life history in 5 minutes while others will be much more reserved. Either approach—and anything in between—is fine. Our job is to listen with empathy—this is the first step toward building trust and rapport with a new patient.
Whenever I walk into the room with a new patient, I always start the conversation by introducing myself and asking, “So what brings you in today?” Even that can be a complicated question for some patients, who will laugh and say, “Where do I even begin?” or “How much do you want to know?” Some patients know quite clearly why they have been referred to a rheumatology practice while others have no idea beyond, “Someone told me I should.” There are also some patients who will roll their eyes at this simple introductory question, having hoped to avoid going through their story one more time with one more healthcare provider.
Jane is a 56-year-old patient who came to our office for the first time in the middle of the COVID-19 pandemic. It was a few months after we had reopened our physical office for patient visits, with the obvious safety restrictions we all became used to. When I took Jane back to one of our exam rooms, I could sense that she was hesitant to open up to me. When I asked her the standard, “So what brings you in today?” question, she replied curtly, “I would have thought you would have read my chart so you would already know the answer to that.” Naturally, I had looked at Jane’s chart before I met her, but a new patient’s medical record doesn’t always give us the full picture of what is going on with them. All I knew about Jane was that she had been referred to us by her primary care physician (PCP) because of “a rash.” We obviously were going to need a lot more information.
After our awkward beginning, I explained to Jane that yes, I had read her chart, but I wanted to hear her story in her own words to make sure that what she was feeling was consistent with what I had read. Again, Jane appeared guarded, but she managed to explain to me that she had a history of psoriasis that had been diagnosed years ago and generally remained quiet without treatment. However, during the last year, she had developed a different sort of rash that had spread over most of her body. She also said she had developed significant pain and swelling in her hands.
Jane’s PCP had initially referred her to a dermatologist, who told her that her rash appeared to be consistent with atopic dermatitis (ie, eczema) and prescribed a topical corticosteroid. When this didn’t improve Jane’s rash, she was started on dupilumab, a newer systemic agent. There was minimal improvement, but after a year on dupilumab, Jane remained frustrated that things had not gotten notably better.
Interestingly, Jane told me that she had never said anything to her dermatologist about the joint pain and swelling she was experiencing because she didn’t think that this had anything to do with her rash. This is something we hear commonly. Thankfully, Jane’s PCP had put the pieces together and referred her to our practice. Still, Jane initially refused to acknowledge the link between her rash and joint swelling. It was clearly going to take some hard work to convince her of the connection.
Once we made the preliminary diagnosis of psoriatic arthritis, we started Jane on infliximab infusions—a 5 mg/kg loading dose at weeks 0, 2, and 6, and then every 8 weeks thereafter. Her first follow-up visit to our office came after the third infusion. Jane’s response wasn’t as substantial as either of us had hoped. Her rash was only minimally improved, and she continued to have swelling in her knuckles and wrists. Jane was frustrated with her lack of progress and seemed skeptical of the guidance our office was providing. “How do I know what you are suggesting is any better than my dermatologist?” she asked me. “It doesn’t seem to be doing much good.”
At this initial follow-up, we pleaded with Jane to stay the course, explaining to her that infliximab frequently takes months to work and that we could either adjust her dose or switch medications if things didn’t get better soon. A few weeks later, Jane called us in alarm to let us know that the psoriasis on her forehead was spreading and beginning to affect her vision. We immediately called in a dose pack of methylprednisolone and ordered an increase of her next dose of infliximab to 6 mg/kg every 8 weeks. Unfortunately, we ran into some resistance from Jane’s insurance company, which did not approve the new dosage, and as soon as we stopped the methylprednisolone, Jane’s psoriasis returned, worsening specifically around her eyelids. While Jane naturally became frustrated by this chain of events, the fact that our practice kept advocating for her health allowed us to keep Jane motivated to try for something better.
Our next step was to switch Jane to golimumab, which was approved by her insurance company but also resulted in a minimal improvement. You can guess how Jane responded to the latest chapter in her saga. Sensing her frustration, I tried to get some more insight into Jane’s day-to-day life to see what changes we might be able to make to her medication regimen. I was slowly beginning to unpeel the onion of Jane’s life, gaining her trust little by little. She told me at this visit that she was an avid reader, and the recent exacerbations of psoriasis around her eyelids was making reading quite difficult and frustrating. We decided at this visit to add leflunomide to her regimen and again switched biologics, this time trying another mechanism of action with secukinumab injections. Importantly, I reinforced to Jane that she should call if she wasn’t noticing improvement or just needed some reassurance that better days were ahead.
In the last 2 months, I’ve talked to Jane more than I had spoken to her in the previous year. She has been much more comfortable asking questions and accepting advice on how to best manage her symptoms. It appears that things are improving with the latest change to secukinumab. Things aren’t yet perfect, but they are better.
Establishing trust with our patients, especially those who have been through the ringer of provider after provider, doesn’t happen overnight. However, because of the chronic nature of rheumatic diseases and the likelihood that patients will be with our practices for an extended period of time, it’s crucial that we develop strategies to break through some of the walls our patients set up. The initial visit is especially challenging, yet also particularly critical. Put yourself in the shoes of your patient, as someone searching for answers who has likely been disappointed multiple times during their healthcare journey. Listen to them and their story, no matter how much or little it may actually impact their overall plan of care. It’s the best way to build trust and help our patients regain the lives they want.
AUTHOR PROFILE: Carrie Beach, BSN, RN-BC, is a rheumatology nurse with the Columbus Arthritis Center in Columbus, OH, and the President of the Rheumatology Nurses Society
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