Evaluation of Self-reported Patient Experiences: Insights from Digital Patient Communities in Psoriatic Arthritis

Abstract

Objective.To evaluate the types of experiences and treatment access challenges of patients with psoriatic arthritis (PsA) using self-reported online narratives.Methods.English-language patient narratives reported between January 2010 and May 2016 were collected from 31 online sources (general health social networking sites, disease-focused patient forums, treatment reviews, general health forums, mainstream social media sites) for analysis of functional impairment and 40 online sources for assessment of barriers to treatment. Using natural language processing and manual curation, patient-reported experiences were categorized into 6 high-level concepts of functional impairment [social, physical, emotional, cognitive, role activity (SPEC-R), and general] and 6 categories to determine barriers to treatment access (coverage ineligibility, out-of-pocket cost, issues with assistance programs, clinical ineligibility, formulary placement/sequence, doctor guidance). The SPEC-R categorization was also applied to 3 validated PsA patient-reported outcome (PRO) instruments to evaluate their capacity to collect lower-level subconcepts extracted from patient narratives.Results.Of 15,390 narratives collected from 3139 patients with PsA for exploratory analysis, physical concepts were the most common (81.5%), followed by emotional (50.7%), cognitive (20.0%), role activity (8.1%), and social (5.6%) concepts. Cognitive impairments and disease burden on family and parenting were not recorded by PsA PRO instruments. The most commonly cited barriers to treatment were coverage ineligibility (51.6%) and high out-of-pocket expenses (31.7%).Conclusion.Patients often discussed physical and emotional implications of PsA in online platforms; some commonly used PRO instruments in PsA may not identify cognitive issues or parenting/family burden. Nearly one-third of patients with PsA reported access barriers to treatment.

Experiences and Treatment Preferences in Patients With Psoriatic Arthritis: A Cross-Sectional Study in the ArthritisPower Registry

“…This study found that symptoms related to musculoskeletal pain were the most bothersome symptoms of PsA, compared with psoriasis-related symptoms, in rheumatology-focused patients with overall low skin disease severity. This finding mirrors other patient impact studies in PsA [3,16,28,29], and patients and rheumatologists are generally in agreement that joint pain is the most burdensome symptom of PsA [30]. However, our findings also highlight other interesting trends.…”

“…Multiple studies have found discrepancies between physicians' understanding of disease burdens and the actual burdens felt by patients [30,34]. Some of this disconnect may stem from the use of patient-reported outcome measures that fail to account for all symptoms and impacts [29]. Ensuring that clinicians and researchers fully understand the burden of symptoms on patients is key to better When probing patient treatment preferences, respondents in this study most strongly desired an improvement in function and joint symptoms, which is reflected in the findings of other studies [5,16].…”

Patient-Reported Outcomes in Psoriatic Arthritis Patients with an Inadequate Response to Biologic Disease-Modifying Antirheumatic Drugs: SELECT-PsA 2

“…PROs reflect many important issues that significantly impact patients with PsA, including challenges in mental, physical, and social functioning, pain, fatigue, work-related disability, in addition to psoriatic, axial, and skin disease symptoms. Many of these symptoms and sequelae of disease are represented by the core domains recommended by the GRAPPA-OMERACT working group to be measured in all RCTs to evaluate treatment efficacy [2,3,18,[37][38][39][40]. In a recent qualitative interview study of PsA patients recruited through the FORWARD databank, joint pain and stiffness, skin symptoms, fatigue, and physical disability were identified as some of the most salient PsA symptoms [39].…”

The Psoriatic Arthritis Experience in Saudi Arabia from the Rheumatologist and Patient Perspectives

“…PsA impacts physical functioning, daily activities, emotional well-being, and health-related quality of life (QoL) [ 6 ]. Although the most impactful symptoms include pain, stiffness, swelling, fatigue, sleep disturbances, and physical disability [ 7 - 9 ], they often go untreated because of diagnosis delays and barriers to accessing care [ 6 , 10 ].…”