Insights from digital patient communities on disease-related impairments that PRO tools may miss.
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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.
Online, patients are discussing psoriatic arthritis symptoms, describing their experiences with specific treatments and with access to care, and providing each other with links to the latest research on the disease. Accordingly, the researchers sought to use online communities as a lens through which they could better understand the impact of psoriatic arthritis on patients’ lives.
They collected 15,390 online narratives posted by 3139 patients with psoriasis sometime between January 2010 and May 2016 on one of 45 different digital patient communities. The median age was 44.0 years, 67.7% of patients were female, and 81.0% were from North America, based on the demographic information investigators were able to find for 762 patients. They reviewed the narratives for discussion of functional impairment, as well as barriers to treatment access.
They also looked at 3 validated psoriatic arthritis PRO instruments to see how well they performed in categorizing specific outcomes concepts extracted from the narratives. Those tools included the Medical Outcomes Study 36-Item Short Form Survey (SF-36), the Psoriatic Arthritis Quality of Life questionnaire (PsAQoL), and the Psoriatic Arthritis Impact of Disease questionnaire (PsAID).
After reviewing the thousands of online narratives for discussion of functional impairment, the researchers found the most common complaints were physical, expressed by 81.5% of patients (n = 2557). In particular, many of those patients noted pain, physical weakness, or dermatologic issues.
About half of patients (50.7%) expressed emotional problems, such as anxiety or depression. Often, these reports were related to pain, itching, or other non-emotional problems. One patient was quoted as saying online: “When you’re dealing with so much pain and no easy solutions, the anger and negativity will just keep snowballing and drag you further down.”
About 20% of patients reported functional impairment related to cognitive problems, ranging from impulsivity, to balance or coordination issues, to mental fatigue and dizziness, investigators said.
Role activity concepts were reported by 8.1% of patients, with more than half stating that they were concerned about how the disease was affecting performance at work or school, and about one in five of these responses expressed concern about impact on parenting ability.
Social concepts were reported by 5.6% of patients, of which about half discussed family burden and about one-quarter noted relationship issues with a spouse or partner.
The researchers’ analysis of PRO instruments revealed that certain concepts were either not covered at all or only covered by one of the tools. These included family burden and parenting, anger or frustration, dermatologic issues, and cognitive impairment.
In particular, the SF-36 was not equipped to evaluate cognitive impairments. The PsAQoL lacked coverage of anxiety, pain, and dermatologic issues, and did not cover any concepts related to cognitive or role activity issues, investigators said. The PsAID performed somewhat better, they added, despite missing the cognitive and role activity impairments.
“Social aspects of disease (family burden) and cognitive issues (mental impairment) were not identified by any of the PRO instruments used in our analysis, suggesting that either patients did not prioritize those domains during development of these PRO instruments, or that a combination of existing tools should be used to cover any gaps,” Dr. Sunkureddi and co-authors wrote.
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.