Background/Purpose: Despite therapeutic advances, major concerns and disparities persist in the care of Still’s Disease (SD). Capturing both patient/caregiver and physician perspectives is essential to optimize patient-centered care. This real-life study aims to assess and compare the perspective of both groups regarding treatment goals, challenges, and unmet needs related to the treatment of SD.

Methods: As part of the METAPHOR project, a PReS/PRINTO initiative to optimize SD and Macrophage Activation Syndrome (MAS) management, 2 surveys, 1 addressed to physicians and 1 to patients/caregivers, were developed by a core team, involving physicians and patients representatives. The physician survey was forwarded through the PReS/PRINTO network, while the patient survey via the Systemic JIA Foundation to all their members. Responses were analyzed using chi-square tests to assess group differences.

Results: 197 physicians and 139 patients/caregivers participated. Most patient respondents were parents or legal guardians (94%), primarily from the United States (64%) and Europe (19%). Physicians were mainly pediatric rheumatologists (90%), from 56 countries worldwide. Regarding treatment goals, both groups prioritized complete symptom control (84% vs 79%, p=0.28) and achieving a quality of life similar to peers (63% vs 73%, p=0.44). However, patients considered pain control a key objective more often than physicians (43% vs 13%, p < 0.001), whereas physicians placed greater emphasis on glucocorticoid reduction (79% vs 54%, p < 0.001).In terms of glucocorticoid-related concerns, mood changes were predominantly reported by patients (65% vs 14%, p < 0.001), whereas physicians were more concerned about osteoporosis (66% vs 32%, p < 0.001), glucose intolerance (52% vs 27%, p < 0.001), and hypertension (51% vs 37%, p=0.02). Both groups highlighted growth delay and infection risk as shared concerns.Regarding fears at treatment initiation, both groups were concerned about treatment failure (82% patients vs 66% physicians, p=0.001) and adverse events (77% vs 72%, p=0.27). However, physicians were more worried about treatment duration (57% vs 21%, p < 0.001), while patients emphasized infection risk (52% vs 27%, p < 0.001) and lack of clear information about the treatment (34% vs 23%, p=0.03).As for future challenges, both groups stressed the need to reduce the burden of glucocorticoid use (68% patients vs 59% physicians, p=0.10). Physicians more frequently cited the inability to prevent MAS (52% vs 40%, p=0.03), while patients highlighted limited physician expertise (57% vs 15%, p < 0.001) and lack of access to psychological support (33% vs 10%, p < 0.001) as major unmet needs.

Conclusion: Besides shared perspectives, patients and physicians show relevant differences in prioritizing treatment outcomes and concerns in SD. Including patient priorities early in the disease course is essential to advancing truly patient-centered care.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/different-perspectives-between-physicians-and-patients-on-treatment-priorities-and-challenges-in-stills-disease/