(P 226) REAL-WORLD MANAGEMENT OF SYMPTOMATIC VS ASYMPTOMATIC TGCT FROM AN OBSERVATIONAL REGISTRY

Objective: Tenosynovial giant cell tumor (TGCT) is a rare neoplasm presenting with a wide range of clinical symptoms and severity. Treatment decisions should balance the possible curative nature of surgery with the benign, potentially indolent, nature of TGCT, the risk recurrence and the potential for surgery-related morbidity. This cross-sectional analysis of an ongoing registry compares management strategies for symptomatic versus asymptomatic TGCT.

Methods: The TGCT Support Registry is an international, prospective database of longitudinal patient-reported demographic, clinical, and pathologic data. This analysis included adults with TGCT, classified as symptomatic or asymptomatic using pain inference and physical function derived from validated patient-reported outcomes tools (e.g., PROMIS-PF).

Results: In this analysis of 1,156 adult TGCT patients, most were female (72.1%, n=833), symptomatic at last entry (77.2%, n=893), with a median age of 44 years (18-85) and had diffuse TGCT (68.8%, n=795) of the knee (67.7%, n=339).
Patients reported being treated by orthopedic surgeons (74.9%) and orthopedic oncologists (56.1%), with frequent involvement of community healthcare providers (54%, n=624). Symptomatic patients had more surgeries (2.8 vs 1.6; p < 0.001) and higher local recurrences rates (63.0% vs 36.6%; p < 0.001). Importantly, 37% of patients reported being symptomatic without recurrence (n=269). Asymptomatic patients were more likely to engage in active surveillance (58.9% vs 42.7%, p < 0.01), had fewer recurrences, and improved quality of life (QoL). Among patients on systemic therapies (n=222), 68.9% (n=153) reported improvement in QoL and greatest improvement was observed in asymptomatic patients (75.5% vs 39.3%, p < 0.01).

Conclusion: This real-world analysis underscores the need for timely diagnosis, early multidisciplinary care, tailored symptom-focused strategies, and integration of physical therapy, palliative care, and thoughtful treatment timing to reduce disease burden and prolong asymptomatic periods. Given the transient nature of symptom status and its influence by repeated interventions, it remains unclear whether sustained dysfunction is driven by TGCT itself or treatment-related sequela.

Table 1. Patient treatments and quality of life (QoL) improvement