Prashanth Sunkureddi1,2, Stephen Doogan3,4, John Heid3,4, Samir Benosman3,4, Alexis Ogdie3,4, Layne Martin3,4, Jacqueline B Palmer3,4. 1. From The University of Texas Medical Branch, Galveston, Texas; Real Life Sciences Inc., New York; CreakyJoints, Global Healthy Living Foundation, Upper Nyack, New York; Perelman School of Medicine at the University of Pennsylvania, Philadelphia, Pennsylvania; Novartis Pharmaceuticals Corporation, East Hanover, New Jersey, USA; Kinapse Ltd., London, UK. DrSunkureddi@clearlakerheumatology.com. 2. P. Sunkureddi, MD, The University of Texas Medical Branch; S. Doogan, BA, Real Life Sciences Inc.; J. Heid, BA, Kinapse Ltd.; S. Benosman, DVM, PhD, Kinapse Ltd.; A. Ogdie, MD, MSCE, Perelman School of Medicine at the University of Pennsylvania; L. Martin, RN, CreakyJoints, Global Healthy Living Foundation; J.B. Palmer, PharmD, Novartis Pharmaceuticals Corporation. DrSunkureddi@clearlakerheumatology.com. 3. From The University of Texas Medical Branch, Galveston, Texas; Real Life Sciences Inc., New York; CreakyJoints, Global Healthy Living Foundation, Upper Nyack, New York; Perelman School of Medicine at the University of Pennsylvania, Philadelphia, Pennsylvania; Novartis Pharmaceuticals Corporation, East Hanover, New Jersey, USA; Kinapse Ltd., London, UK. 4. P. Sunkureddi, MD, The University of Texas Medical Branch; S. Doogan, BA, Real Life Sciences Inc.; J. Heid, BA, Kinapse Ltd.; S. Benosman, DVM, PhD, Kinapse Ltd.; A. Ogdie, MD, MSCE, Perelman School of Medicine at the University of Pennsylvania; L. Martin, RN, CreakyJoints, Global Healthy Living Foundation; J.B. Palmer, PharmD, Novartis Pharmaceuticals Corporation.
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.
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.
Entities:
Keywords:
PATIENT INSIGHTS; PATIENT-REPORTED OUTCOME MEASURES; PSORIATIC ARTHRITIS; REAL-WORLD DATA; SOCIAL MEDIA
Authors: Rebecca Haberman; Lourdes M Perez-Chada; Joseph F Merola; Jose Scher; Alexis Ogdie; Soumya M Reddy Journal: Curr Rheumatol Rep Date: 2018-10-26 Impact factor: 4.592
Authors: Alexis Ogdie; Kelley Myers; Carol Mansfield; William Tillett; Peter Nash; Colton Leach; W Benjamin Nowell; Kelly Gavigan; Patrick Zueger; Erin McDearmon-Blondell; Jessica Walsh Journal: Rheumatol Ther Date: 2022-03-13