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Many patients value conversations with their rheumatologists and oncologists more than just reading information from a website.
Patients with rheumatoid arthritis (RA) and concomitant cancer face complex treatment decisions and often seek more detailed information and collaborative communication with their care teams, according to findings from a qualitative study.1
The study involved interviews with 20 patients who had both RA and cancer and were treated at University of Texas MD Anderson Cancer Center outpatient clinics. These interviews explored patients’ beliefs, treatment preferences, and informational needs regarding RA therapy. Researchers found that although most patients relied on their physicians for guidance, they expressed a strong desire for more personalized information, particularly regarding the impact of RA therapies on cancer outcomes. The findings were published in BMC Rheumatology.
Fifteen of the 20 participants were women, and the mean (SD) age was 59.9 (9.8) years. Cancer types varied, with 4 patients each having breast cancer, melanoma, or blood cancer; 1 patient each had lung, colon, prostate, uterine, ovarian, thyroid, oropharynx, or neuroendocrine cancer. At the time of the interviews, 11 patients had no evidence of cancer, whereas 6 had metastatic cancer and 3 had local. The median time since diagnosis was 11 years for RA and 3.5 for cancer; 18 patients reported active RA at the time of their cancer diagnosis.
Prior to receiving their cancer diagnosis, the majority of patients had used conventional synthetic disease-modifying antirheumatic drugs (csDMARDs) to treat their RA, followed by biologic DMARDs, with a few patients receiving targeted synthetic DMARDs and glucocorticoids. Following their cancer diagnosis, however, fewer patients were still on DMARDs and only 7 remained on glucocorticoids. The biggest numerical difference was seen with csDMARDs, dropping from 15 to 9 patients still receiving the treatment.
Almost all patients said they valued direct conversations with their physicians. | Image credit: Seventyfour – stock.adobe.com
Discussions with both rheumatologists and oncologists were central to decision-making. Most patients said their concerns—such as how RA treatment might affect their cancer or how cancer treatment might worsen RA symptoms—were addressed in clinical conversations. However, some noted gaps in clarity, particularly around drug interactions, risk statistics, and timing for restarting RA therapies after cancer treatment. For example, a participant said their provider described everything “down to the tee,” but others reported their RA being left untreated for 5 years due to cancer, not having a conversation with their oncologist about the crossover with RA, and confusion around treatment options.
“He wasn’t able to provide any statistics as far as, if there’s an increased risk or a frequency of lymphoma due to taking [etanercept] because I’ve already had cancer,” one participant said about their care provider. “There were no statistics available on that.”
Although evidence linking RA medication use to cancer progression remains limited and inconsistent, patients expressed mixed beliefs about the relationship.2 Half did not believe their RA treatment directly impacted their cancer progression or risk, or at least that it couldn’t happen to them.1 “I think about it affecting my body,” a patient clarified. “I mean, I know that the medications that they use to treat the RA could cause cancer, but it’s highly doubtful that it caused the type of cancer that I have.”
“I don’t have any fears or concerns about that,” another patient said, expressing confidence in their care team. “My doctors—the oncologist and my rheumatologist—kept in close contact with one another, and so I felt very safe and secure.”
Yet the other half voiced fears about cancer recurrence, weakened immunity, and drug interactions, especially concerning tumor necrosis factor inhibitors like etanercept and adalimumab, as well as steroids. Still, most patients said they would be willing to continue or start RA therapy even if its impact on cancer was uncertain. “I’m more concerned about the arthritis than I am the cancer,” one participant said. “I care about quality of life.”
The decision-making process was largely collaborative, according to the study. Most patients said they shared treatment decisions with their physicians, and those who were not involved in the process said they would have liked a greater voice. Factors contributing to treatment decisions included prior experiences with RA medications, test results, risk-benefit conversations with providers, and—less common—information from websites or educational materials.
When asked about preferred ways to receive information, nearly all patients said they valued direct conversations with their rheumatologists and oncologists. Many also appreciated having written materials, videos, or visuals and were interested in peer testimonials, whereas others wanted to see numerical or probabilistic data on treatment risks.
“We discussed the steroid shots to help with the joint swelling and pain—and the muscle soreness, but I wanted to talk with my cancer doctor before I gave the rheumatologist an answer about using the steroids,” a patient shared. Another said it helped for their doctors to use plain language when explaining the science, and that “some doctors will just use doctors’ terms, but they actually broke it down,” calling it “medical science for dummies.”
The authors emphasized the need for consensus guidance that addresses the concerns of patients with RA and cancer. Recommendations developed by rheumatology and oncology societies together may help fill this gap.
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