Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
Review
. 2025 Aug;21(18):2385-2400.
doi: 10.1080/14796694.2025.2520744. Epub 2025 Jun 22.

The economic and humanistic burden of tenosynovial giant cell tumor: a targeted literature review

Michiel van de Sande  1 , Jean-Yves Blay  2 , William Tap  3 , Max Lee  4 , Emily Kaiser  4 , Steph Beaver  4 , Brooke Harrow  5 , Nicholas A Zeringo  6 , Nicholas Bernthal  7
Affiliations
Review

The economic and humanistic burden of tenosynovial giant cell tumor: a targeted literature review

Michiel van de Sande et al. Future Oncol. 2025 Aug.

Abstract

Aim: To understand the epidemiology, treatment patterns, economic burden, and humanistic burden of tenosynovial giant cell tumor (TGCT) in the contemporary treatment landscape.

Methods: Embase, MEDLINE, and select conferences were searched to identify studies published between 1 January 2013, and 22/23 August 2023 (database dependent) that included ≥ 20 TGCT patients (≥ 40 for humanistic burden studies). For economic outcomes and treatment patterns, data from 1 January 2008, and later were included.

Results: A total of 35 studies were included. The incidence of TGCT was < 50 cases/million person-years. Surgery was the most common treatment, for which recurrence rates were up to 67%. While quality of life improved after surgery in the absence of recurrence, repeat surgeries for persistent symptoms or recurrent tumors negatively impacted quality of life and inflicted a high economic burden. Systemic therapies were effective and overall improved patient symptoms and quality of life. Treatment was multidisciplinary and involved orthopedic surgeons and medical oncologists as well as supplemental care such as physical therapy.

Conclusion: TGCT has a high burden, which can be exacerbated by repeat surgeries. Systemic therapies may improve disease and quality of life outcomes in some patients with tumors that are locally advanced or in complicated anatomical locations.

Keywords: CSF1R; PVNS; TGCT; cost; orthopedic surgery; patient-reported outcomes; quality of life; treatment patterns.

Plain language summary

Tenosynovial giant cell tumor (TGCT) is a rare disease that affects the joints and surrounding tissues. We reviewed published studies to understand how common TGCT is, current treatments, healthcare-related services and costs, and its impact on patients. Studies confirmed that TGCT is rare and that it impacts a relatively young population. Patients with TGCT commonly experience pain and stiffness and have less mobility and worse overall quality of life compared with the general population. Most patients with symptoms are treated with surgery. However, TGCT can come back after surgery in up to 2 out of 3 patients, potentially requiring them to undergo additional surgeries, which may be expensive and worsen symptoms. Alternatively, medications can be used for treatment and improve symptoms and quality of life for many patients. However, medications are not currently widely available and some are associated with negative side effects. More studies on existing medications and new medications that have fewer side effects are needed. In addition to surgery and medications, many patients receive physical therapy. Treatment decisions should consider the risks and benefits of all options on an individual basis.

PubMed Disclaimer

Figures

Figure 1.
Figure 1.
Treatment sequences and repeat surgeries.
Figure 2.
Figure 2.
Post-operative recurrence rates by cohort in nine studies reporting assessment timeframes.
See this image and copyright information in PMC

Similar articles

See all similar articles

References

    1. Cupp JS, Miller MA, Montgomery KD, et al. Translocation and expression of CSF1 in pigmented villonodular synovitis, tenosynovial giant cell tumor, rheumatoid arthritis and other reactive synovitides. Am J Surg Pathol. 2007. Jun;31(6):970–976. doi: 10.1097/PAS.0b013e31802b86f8 - DOI - PubMed
    1. Molena B, Sfriso P, Oliviero F, et al. Synovial colony-stimulating factor-1 mRNA expression in diffuse pigmented villonodular synovitis. Clin Exp Rheumatol. 2011. May;29(3):547–550. - PubMed
    1. West RB, Rubin BP, Miller MA, et al. A landscape effect in tenosynovial giant-cell tumor from activation of CSF1 expression by a translocation in a minority of tumor cells. Proc Natl Acad Sci U S A. 2006. Jan 17;103(3):690–695. doi: 10.1073/pnas.0507321103 - DOI - PMC - PubMed
    1. Stacchiotti S, Durr HR, Schaefer IM, et al. Best clinical management of tenosynovial giant cell tumour (TGCT): a consensus paper from the community of experts. Cancer Treat Rev. 2023. Jan;112:102491. doi: 10.1016/j.ctrv.2022.102491. - DOI - PubMed

    2. •• A global consensus paper on the best clinical management of TGCT involving experts from several disciplines and patient representatives to define an evidence-based approach for TGCT treatment.

    1. Gouin F, Noailles T.. Localized and diffuse forms of tenosynovial giant cell tumor (formerly giant cell tumor of the tendon sheath and pigmented villonodular synovitis). Orthop Traumatol Surg Res. 2017. Feb;103(1S):S91–S97. doi: 10.1016/j.otsr.2016.11.002 - DOI - PubMed

MeSH terms

LinkOut - more resources