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

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.

Diagnostic Delay in Psoriatic Arthritis: A Population-based Study

“…Similarly, delay could be related to provider misattribution of PsA signs or symptoms to more common conditions, such as trauma, overuse, degenerative disease, fibromyalgia, or gout. In a US patient survey, less recognized symptoms of PsA, such as enthesitis and back pain, were also associated with diagnostic delay (19). Inflammatory back pain symptoms were not different between patients with and without diagnostic delay in our study.…”

Trends in psoriatic arthritis epidemiology in Poland

“…Diagnostic delays may in turn lead to serious health consequences—a study by Harron et al showed that the diagnostic delay of even 6 months can lead to significantly more radiographic damage and worse physical function [ 21 ]. In order to ensure early detection of the disease, it seems crucial to promptly refer a patient with a suspected PsA to a rheumatologist as distinguishing PsA from other joint diseases may be challenging for a non-rheumatologist [ 22 ].…”

Patient-Centered Care in Psoriatic Arthritis—A Perspective on Inflammation, Disease Activity, and Psychosocial Factors

“…The nature of PsA symptoms at early stages can often be misattributed to psychological distress rather than somatic illness, which leads to clinical inertia and progression of untreated disease, further exacerbating concerns over somatic manifestations. It has been observed that misdiagnoses, of which psychosomatic disorders represent over one fourth, are associated with delays in diagnosis [ 4 ]. Nontreatment and undertreatment have been reported for a large proportion of patients, with patient dissatisfaction over therapy remaining prevalent, suggesting that important patient domains are not adequately improved, while physicians may not be inclined to initiate or intensify treatment [ 10 , 11 ].…”

“…PsA is preceded by a preclinical phase with nonspecific musculoskeletal symptoms (e.g., pain, stiffness, joint tenderness), though not all patients with psoriasis will develop PsA, nor is family history of disease a deciding factor. Delays in the route to PsA diagnosis can commonly occur over several months [ 4 ], which can lead to mental distress and patient dissatisfaction (see Figure 1 ). Symptoms related to arthralgia (pain, stiffness, tenderness) or evidence of subclinical synovitis may confer a higher risk for developing PsA [ 5 , 6 , 7 ].…”