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

acr abstracts logo 2019


Prashanth Sunkureddi1, Dawn Gibson2, Stephen Doogan3, John Heid4, Samir Benosman5 and Yujin Park61Rheumatology, Clear Lake Rheumatology Center, Nassau Bay, TX, 2The Global Healthy Living Foundation, Upper Nyack, NY, 3Real Life Sciences, New York, NY, 4Kinapse, Inc, London, United Kingdom, 5Advisory Services, Kinapse, Inc, London, United Kingdom, 6Novartis Pharmaceuticals Corporation, East Hanover, NJ

Meeting: 2016 ACR/ARHP Annual Meeting

Date of first publication: September 28, 2016


Ankylosing Spondylitis (AS) is a chronic inflammatory disorder of the spinal joints that can lead to severe, chronic pain and discomfort. There is a substantial disease burden on AS patients as they experience reduction in physical function, increased risk of unemployment, and increased direct and indirect health costs. This study aimed to better understand AS disease burden by describing patient experiences reported online and making comparison to existing patient-reported outcome (PRO) instruments to identify potential gaps.


Patient narratives between Jan 2010 and May 2016 from 52 online sources were collected; of the online sources, 46.6% were patient health networking sites, 24.9% disease-specific patient forums, 13.5% general health forums, 8.3% treatment reviews, 6.0% Doctor Q&A, and 0.6% mainstream social media. Using a natural language processing platform and manual curation, functional impairments and symptoms related to AS were evaluated and grouped into 6 high-level concepts: Social, Physical, Emotional, Cognitive, Role Activity (SPEC-R), and General (consisting of non-specific narratives, e.g. feeling unwell). These broad categories provided a starting point for organizing the data, with additional levels of detail added through sub-concept groupings. For comparison, the same SPEC-R categorization was applied to 5 AS-specific PRO instruments: ASQoL, ASAS-HI, BASDAI, HAQ-S, and BASFI (81 PRO questions curated, 40 total sub-concepts identified). PRO Instruments were then compared to key concepts and sub-concepts extracted from patient narratives.


A total of 34,780 unguided narratives from 3,449 patients were collected for analysis: 86.7% of patient narratives correlated to the Physical concept, 32.5% to Emotional, 23.6% to Cognitive, 8.7% to Role Activity, 5.6% to Social, and 69.1% to General (Table 1). Some of the common concepts reported by patients, such as pain (65%), muscle weakness (20%), and musculoskeletal impairment (20%), depression (10%), and anger/frustration (5%) were effectively captured by more than 2 of the PRO instruments. However, commonly reported emotional concepts, such as anxiety (19%), and cognitive concepts, such as mental impairment (3.2%), were not captured in the PRO instruments evaluated in this analysis.


Analysis of self-reported patient narratives from online sources showed that some physical and emotional concepts, such as depression and pain, are effectively addressed by existing PRO instruments. However, the analysis also uncovered some concepts that may be important in addressing disease burden in AS patients but are not currently captured in existing PRO instruments. This study helps identify opportunities to refine existing PRO instruments.


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