In online communities, people with psoriatic arthritis are discussing disease-related impairments that are not always captured in commonly used patient-reported outcome (PRO) instruments, researchers have found.
Cognitive issues and parenting/family burden were two hot topics in digital patient platforms that PRO instruments were not adequately equipped to evaluate, according to their analysis, which included thousands of patient narratives posted over a span of more than 6 years. Based on these findings, a combination of existing evaluations might be needed to ensure that patient impairments are adequately captured, according to researcher Prashanth Sunkureddi, MD, of The University of Texas Medical Branch, Galveston, and co-investigators.
“No single tool collects all the major concepts that patients discuss most often,” Dr. Sunkureddi and co-authors wrote in The Journal of Rheumatology. The study also included an assessment of functional impairments and barriers to care expressed online by patients with psoriatic arthritis.
Online communities offer a “plethora of information on firsthand experience,” and reflect how patients as well as family members and caregivers cope with the burden of psoriatic arthritis, according to Dr. Sunkureddi and colleagues. Beyond well-known platforms such as Twitter, there are other specific communities where patients with psoriatic arthritis participate and interact with peers, including TalkPsoriasis, which is hosted by the National Psoriasis Foundation, Living With PsA, and PatientsLikeMe, to name a few.
Sunkureddi P, Doogan S, Heid J, et al. Evaluation of self-reported patient experiences: insights from digital patient communities in psoriatic arthritis. J Rheumatol. 2018;45:638-647.