Physicians may overlook ‘deep sense of vulnerability’ in patients with psoriatic arthritis
Key takeaways:
- Access to care and health uncertainty were among the top priorities for patients with psoriatic arthritis, but not for physicians.
- Physicians highly prioritized symptoms, while patients highlighted life impacts.
Uncertainty about future care and life impacts were among the top concerns for patients with psoriatic arthritis, but not for physicians, who highly prioritized individual symptoms, according to data published in ACR Open Rheumatology.
The finding emerged from a study aiming “to better understand ‘what matters’ to patients with psoriatic arthritis” and determine whether that diverged with what matters to physicians, investigator Philip J. Mease, MD, of Providence Swedish Medical Center, in Seattle, told Healio.
“Understanding divergence could lead clinicians to be more sensitive about their patient’s concerns in the patient-clinician interaction, leading to more trust and meaningfulness in their relationship and improved shared decision making about disease assessment and therapeutic actions,” Mease said.
To better understand the experiences and priorities of patients with PsA, Mease and colleagues conducted a series of focus groups and Delphi exercises. The process began with four focus groups of adults with PsA — totaling 24 patients — led by a medical anthropologist at three academic rheumatology practices. Patients in the focus groups shared their PsA journeys, listed words describing PsA and discussed their perspectives on the disease.
Their discussions were transcribed, summarized and combined with PsA topics previously identified by the Group for Research and Assessment of Psoriasis and Psoriatic Arthritis to generate a “comprehensive” list of 51 items describing the PsA experience, such as “arthritis,” “fatigue” and “future health uncertainty,” the researchers wrote.
Then, two Delphi exercises were conducted — one involving 52 patients from same three academic centers, including most of the focus group participants, and another involving 13 PsA clinicians. Across all 51 identified domains, participants were each given 100 points to assign according to their level of importance. After three rounds, items with the top 10 average scores from patients and physicians were identified as each group’s top priorities.
According to the researchers, patients and physicians both highly prioritized disease activity, pain, fatigue and arthritis. However, two domains identified via the patient focus groups, and included among patients’ top priorities — access to care and future health uncertainty — did not rank at all among physician priorities.
“I was really struck by the ‘future uncertainty’ importance and the deep sense of vulnerability it portrayed,” Mease said.
These concerns included medicines losing effect, the unpredictability of flare-ups and the potential for their doctors to retire, he added.
This finding has already influenced Mease’s practice.
“I have had more conversations with patients about this since this came out of the focus groups and am much more empathic about this sense of vulnerability,” Mease said. “I find myself more able to question patients about this and explore their feelings of uncertainty about the future and, as best I can, reassure them and let them know that their health care providers will be there for them.”
Meanwhile, physicians additionally gave priority to several clinical manifestations — including enthesitis, dactylitis and skin disease — while patients more often prioritized impact on daily activities and sleep quality.
“Patients tended to focus more on the effect that these symptoms had on their function and quality of life, whereas clinicians focused more on the symptoms themselves,” he said.
According to Mease, another focus group study, analyzing patients separately by sex, is under way in Seattle, Cleveland and Toronto. That effort, known as Qual-SAGE, is part of the larger SAGE study, aimed at understanding why many studies suggest women with PsA have lower treatment response than men.
“I believe that qualitative research can explore more deeply the human experience of disease, which can add important color to the black and white data of clinical research, and hopefully contribute to our being a little wiser and more empathic in the clinician-patient interaction,” Mease said.
For more information:
Philip J. Mease, MD, can be reached at pmease@philipmease.com.
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