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

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.

Using Self-Reported Patient Experiences to Understand Patient Burden: Learnings from Digital Patient Communities in Ankylosing Spondylitis.

INTRODUCTION: Online communities contain a wealth of information containing unsolicited patient experiences that may go beyond what is captured by guided surveys or patient-reported outcome (PRO) instruments used in clinical settings. This study described patient experiences reported online to better understand the day-to-day disease burden of ankylosing spondylitis (AS). METHODS: Unguided, English-language patient narratives reported between January 2010 and May 2016 were collected from 52 online sources (e.g., general/health social networking sites, patient-physician Q&A sites, AS forums). Using natural language processing combined with manual curation, patient-reported experiences within narratives were evaluated and categorized into social, physical, emotional, cognitive, and role activity (SPEC-R) concepts to assess functional impairment. The same SPEC-R categorization was applied to 5 AS-specific PRO instruments to evaluate their coverage of concepts extracted from patient narratives. RESULTS: A total of 34,780 narratives from 3449 patients with AS were included. Physical aspects of AS (e.g., pain and mobility) were most commonly reported by patients (86.7%), followed by emotional (32.5%), cognitive (23.6%), role activity (8.7%) and social (5.1%). Some frequently discussed subconcepts were effectively captured by ≥ 2 PRO instruments, such as pain (65.3%), asthenia (19.9%), musculoskeletal impairment (19.9%), depression (9.9%), and anger/frustration (5.4%); others [e.g., anxiety (19.1%), mental impairment (3.2%), impulsivity (2.9%)] were not addressed by any of the PRO instruments. CONCLUSION: These findings highlight the importance of analyzing patient experiences beyond clinical trial settings and physician reports; continuous assessment of existing PRO instruments in collaboration with patients may increase their utility in real-world settings. FUNDING: Novartis Pharmaceuticals Corporation.