Abstract
BackgroundTenosynovial Giant-Cell Tumour (TGCT) is a benign clonal neoplastic proliferation arising from the synovium, causing a variety of symptoms and often requiring repetitive surgery. This study aims to define the economic burden—from a societal perspective—associated with TGCT patients and their health-related quality of life (HRQOL) in six European countries.MethodsThis article analyses data from a multinational, multicentre, prospective observational registry, the TGCT Observational Platform Project (TOPP), involving hospitals and tertiary sarcoma centres from six European countries (Austria, France, Germany, Italy, the Netherlands, and Spain). It includes information on TGCT patients’ health-related quality of life and healthcare and non-healthcare resources used at baseline (the 12-month period prior to the patients entering the registry) and after 12 months of follow-up.Results146 TGCT patients enrolled for the study, of which 137 fulfilled the inclusion criteria. Their mean age was 44.5 years, and 62% were female. The annual average total costs associated with TGCT were €4866 at baseline and €5160 at the 12-month follow-up visit. The annual average healthcare costs associated with TGCT were €4620 at baseline, of which 67% and 18% corresponded to surgery and medical visits, respectively. At the 12-month follow-up, the mean healthcare costs amounted to €5094, with surgery representing 70% of total costs. Loss of productivity represented, on average, 5% of the total cost at baseline and 1.3% at follow-up. The most-affected HRQOL dimensions, measured with the EQ-5D-5L instrument, were pain or discomfort, mobility, and the performance of usual activities, both at baseline and at the follow-up visit. Regarding HRQOL, patients declared a mean index score of 0.75 at baseline and 0.76 at the 12-month follow-up.ConclusionThe results suggest that TGCT places a heavy burden on its sufferers, which increases after one year of follow-up, mainly due to the healthcare resources required—in particular, surgical procedures. As a result, this condition has a high economic impact on healthcare budgets, while the HRQOL of TGCT patients substantially deteriorates over time.
Highlights
The World Health Organisation’s classification of Tumours of Soft Tissue and Bone (2020) distinguishes two types of Tenosynovial Giant-Cell Tumour (TGCT): Lopez‐Bastida et al Orphanet J Rare Dis (2021) 16:294 localised and diffuse lesions [1]
The outcomes reported by patients about TGCT symptoms and health-related quality of life were assessed at that time, together with the healthcare resources used in the past 12 months
A total of 146 TGCT patients enrolled in the study
Summary
The World Health Organisation’s classification of Tumours of Soft Tissue and Bone (2020) distinguishes two types of Tenosynovial Giant-Cell Tumour (TGCT): Lopez‐Bastida et al Orphanet J Rare Dis (2021) 16:294 localised and diffuse lesions [1]. Rare, TGCTs are probably under-reported and underdiagnosed, with an estimated overall annual incidence in the United States of 11 cases per million—1.8 cases per million for diffuse-type TGCT and 9.2 cases per million for localised TGCT [5]. The aggregate incidence rate in European countries is estimated at 5 cases per million [6]. A Danish study on localised and diffuse TGCT patients showed that their incidence rates per million person years were 30.3 and 8.4, respectively. This study aims to define the economic burden—from a societal perspective—associated with TGCT patients and their health-related quality of life (HRQOL) in six European countries
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