Deciphering difficult-to-treat psoriatic arthritis: insights from an international survey of patients with psoriatic arthritis

Abstract Objectives Psoriatic arthritis (PsA) is a heterogeneous inflammatory disease in which a significant proportion of patients remain refractory to existing therapies. The Group for Research and Assessment of Psoriasis and Psoriatic Arthritis (GRAPPA) initiated a project aimed at unravelling the reasons for treatment failures in PsA, culminating in the establishment of definitions for difficult-to-treat PsA (D2T-PsA) and complex-to-manage PsA (C2M-PsA). This study explores patient perspectives on treatment-resistant PsA, incorporating a broader patient perspective into the overarching GRAPPA project. Methods A multilingual (10 languages), online survey to explore PsA patients' perspectives on treatment inefficacies was used. It was developed collaboratively by GRAPPA members and patient research partners. It included sections on demographic data, structured questions about treatment failures, and open-ended questions. Data analysis used descriptive statistics and inductive coding of qualitative responses via Dedoose. Results Among 570 respondents, most were female (68.8%) and White (72.6%), with an average PsA diagnosis delay of 4.3 years. Key contributors to D2T- and C2M-PsA were persistent joint pain and psoriasis (65.7%), fatigue (52.8%) and medication side effects (41.7%). Ranked by impact, arthritis was the most debilitating symptom. Quality of life concerns were notable, with sleep impairment and reduced life enjoyment being reported by 66.4%. Language differences emerged; for instance, Dutch and Italian respondents prioritized fatigue and daily life impact, respectively. Conclusion This is the first international study to highlight patient-driven insights in the management of resistant PsA, emphasizing a multidimensional approach that considers biological and psychosocial factors. These insights will inform the ongoing GRAPPA initiative to standardize definitions for treatment-resistant PsA, ultimately improving patient care.