Localized and diffuse tenosynovial giant cell tumor: Real-world results from a patient observational registry Journal Article
| Authors: | Stern, S.; McKenzie, P. F.; Bernthal, N.; O’Neill, S.; Palmerini, E.; Randall, R. L.; Tap, W.; Scharschmidt, T.; Rothschild, S. |
| Article Title: | Localized and diffuse tenosynovial giant cell tumor: Real-world results from a patient observational registry |
| Abstract: | Background: Tenosynovial Giant Cell Tumor (TGCT) is a rare, locally aggressive neoplasm that adversely impact patients’ physical function and quality of life (QoL). This cross-sectional analysis leverages real-world data from the TGCT Support Patient Registry to elucidate the patient experience with TGCT and the disease burden across healthcare systems. Research design and methods: A total of 497 patients from 32 countries, 71.4% (n = 355) with diffuse-TGCT (D-TGCT), 18.9% (n = 94) with localized TGCT (L-TGCT), and 9.7% (n = 28) with unspecified TGCT were included in this cross-sectional analysis of the TGCT Support Registry. Results: A majority of patients (61.2%, n = 304) were diagnosed by orthopedic/sports medicine surgeons, half (n = 248) were misdiagnosed prior to their TGCT diagnosis, and 32% (n = 278) of patients were diagnosed > 24 months following symptom onset. 79.1% (n = 393) of all patients had ≥ 1 resection and 63% of those patients reported ≥ 1 recurrence. Of those patients that had recurrence following resection, 59% had ≥ 2 recurrences. 23% of patients (n = 115) changed occupations or prematurely retired due to TGCT and the proportion of patients increased with > 2 surgeries. Conclusion: Greater awareness of TGCT among HCPs is needed to facilitate diagnosis and referral to multidisciplinary teams is warranted to reduce recurrence rates, number of surgical interventions, and improve QoL. © 2025 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group. |
| Keywords: | adolescent; adult; aged; middle aged; young adult; major clinical study; recurrence risk; imatinib; quality of life; pain; neoplasm recurrence, local; pathology; protein tyrosine kinase inhibitor; sarcoma; questionnaire; register; registries; minimal residual disease; tumor recurrence; diagnosis; tophaceous gout; health care personnel; surgery; health care system; fibroma; cross-sectional study; cross-sectional studies; rheumatoid arthritis; osteoarthritis; epidemiology; corticosteroid; observational study; therapy; solid tumors; narcotic agent; gabapentin; swelling; popliteal cyst; demographics; patient-reported outcome; patient experience; humans; human; male; female; article; bursitis; physical functioning; pexidartinib; giant cell tumor of tendon sheath; real-world evidence; patient registry; diffuse tenosynovial giant cell tumor; scar tissue; vimseltinib; electronic questionnaire; sprain |
| Journal Title: | Future Oncology |
| Volume: | 21 |
| Issue: | 12 |
| ISSN: | 1479-6694 |
| Publisher: | Future Medicine |
| Date Published: | 2025-01-01 |
| Start Page: | 1501 |
| End Page: | 1510 |
| Language: | English |
| DOI: | 10.1080/14796694.2025.2488635 |
| PUBMED: | 40197108 |
| PROVIDER: | scopus |
| PMCID: | PMC12077479 |
| DOI/URL: | |
| Notes: | Article -- Source: Scopus |
