Data published in the Journal of Rheumatology revealed that 27% of patients with psoriatic arthritis who had experience with biologics and/or small-molecule agents reported barriers to treatment, with the most common hurdles being coverage ineligibility and high out-of-pocket costs.
The researchers also found that patients with PsA who described their experiences via online forums and social media often focused on the physical and emotional implications of the condition.
“Patients in online communities often discuss symptoms, describe their experiences with accessing and using different treatments, and provide links to research articles on psoriasis and psoriatic arthritis,” Prashanth Sunkureddi, MD, of the University of Texas Medical Branch, in Galveston, told Healio Rheumatology. “These online communities provide a wealth of untapped information on firsthand experiences on how patients, family members, and caregivers deal with their disease burden.”
The most common hurdles to treatment among patients with psoriatic arthritis who had experience with biologics and/or small-molecule agents were coverage ineligibility and high out-of-pocket cost.
According to Sunkureddi, the study was the “first comprehensive analysis of pre-existing and unsolicited real-world patient experiences,” collected from multiple online forums and social media sites using natural language processing. To evaluate these narratives, the researchers analyzed 31 websites for views on functional impairment and 40 online sources for descriptions of treatment barriers among patients with PsA. Online sources included general health social networks, disease-focused patient forums, treatment reviews, general health forums and mainstream social media.
Sunkureddi and colleagues collected 15,390 narratives from 3,139 patients. Researchers placed patient experiences into one of six categories based on various functional impairment concepts they described — social, physical, emotional, cognitive, role activity and general. The researchers created an additional six categories to determine barriers to treatment, including coverage ineligibility, out-of-pocket cost, issues with assistance programs, clinical ineligibility, formulary placement or sequence doctor guidance.
They applied the role activity category to three traditional patient-reported outcomes instruments, to determine their ability to collect lower-level data from the collected narratives.
According to the researchers, physical concepts of functional impairment represented 81.5% of the total narratives collected in the study. Emotional concepts comprised 50.7% of the narratives, with 20% covering cognitive impairments, 8.1% discussing role activity and 5.6% focusing on social aspects. Among the discussed treatment barriers, coverage ineligibility accounted for 51.6% of the narratives, with 31.7% noting the high out-of-pocket expense. However, cognitive impairments and the burden PsA places on family members could not be recorded by traditional patient-reported outcome instruments.
“Our results show that although patients with psoriatic arthritis most often discussed physical and emotional aspects of their disease online, such as pain and anxiety, some patients also reported the impact of their disease on cognitive and social aspects, which may not be captured by traditional [patient-reported outcome] tools in clinical settings,” Sunkureddi said. “We also found that approximately one-third of patients who discussed experiences with biologic therapy reported barriers in accessing their treatment, though further investigation is needed to better understand how to mitigate access challenges across different regions.”
He added that the findings point to the value of the types of patient narratives found in online peer groups.
Sunkureddi concluded, “Our findings complement those from other qualitative focus group studies and highlight the value of obtaining online self-reported experiences in patients with psoriatic arthritis, because no single tool collects all the major concepts that patients discuss most often in real-world settings.” – by Jason Laday
Disclosure: The researchers report funding from Novartis Pharmaceuticals Corporation.