Patient perspectives on the pathway to psoriatic arthritis diagnosis: results from a web-based survey of patients in the United States

Alexis Ogdie; W Benjamin Nowell; Eddie Applegate; Kelly Gavigan; Shilpa Venkatachalam; Marie de la Cruz; Emuella Flood; Ethan J Schwartz; Beverly Romero; Peter Hur

doi:10.1186/s41927-019-0102-7

Patient perspectives on the pathway to psoriatic arthritis diagnosis: results from a web-based survey of patients in the United States

BMC Rheumatol. 2020 Jan 10:4:2. doi: 10.1186/s41927-019-0102-7. eCollection 2020.

Authors

Affiliations

¹ 1Perelman School of Medicine at the University of Pennsylvania, Philadelphia, PA USA.
² 2Hospital of the University of Pennsylvania, 3400 Spruce Street, 5 White Building, Philadelphia, PA 19104-4283 USA.
³ 3Global Healthy Living Foundation, Upper Nyack, NY USA.
⁴ 4ICON, Gaithersburg, MD USA.
⁵ 5Novartis Pharmaceuticals Corporation, East Hanover, NJ USA.

Abstract

Background: There are limited real-world data on the diagnostic experiences of patients with psoriatic arthritis (PsA), including medical care sought and potential barriers to diagnosis. We aim to describe patient experiences related to receiving a PsA diagnosis.

Methods: Ours was a mixed-method, 2-phase study. Phase 1 comprised concept elicitation and cognitive interviews with clinical experts and adults diagnosed with PsA to develop a cross sectional, web-based survey. US adults with a self-reported PsA diagnosis were recruited through a patient support community (CreakyJoints), an online patient research registry (ArthritisPower), and social media outreach. In Phase 2, the online survey collected data on sociodemographics, clinical symptoms, disease burden, and diagnosis history of survey respondents with PsA.

Results: Of the 203 respondents included, 172 (84.7%) were female, and the mean (SD) age was 51.6 (10.8) years. The time between seeking medical attention and receiving a diagnosis was < 6 months for 69 respondents, 6 months to 4 years for 68 respondents, and ≥ 5 years for 66 respondents. Most respondents sought care from general practitioners (79.8%) and rheumatologists (66.5%). Common initial symptoms that led respondents to seek medical attention were joint pain (70.0%) and stiffness (53.7%). Among the initial symptoms that led respondents to seek care, joint pain, swollen joints, and sausage-like fingers or toes (indicating dactylitis) were more common among respondents with shorter time to diagnosis, whereas stiffness, fatigue, enthesitis (indicated by foot problems, tendon and ligament pain), and back pain were more common among respondents with longer time to diagnosis. Common misdiagnoses were psychosomatic issues (26.6%) and osteoarthritis (21.7%). Respondents with shorter times to diagnosis had lower frequencies of misdiagnosis.

Conclusions: Respondents with PsA reported delays in diagnosis and misdiagnoses on their journey to a PsA diagnosis. Symptom differences, such as enthesitis and stiffness, were noted among respondents with shorter vs longer time to diagnosis. Increased understanding of diagnostic barriers may lead to earlier diagnosis and appropriate management to improve outcomes.

Keywords: Diagnosis; Psoriatic arthritis; Spondyloarthropathy; Surveys and questionnaires.