OBJECTIVES: Little is known about health-related quality of life (HRQoL) and economic burden in Chinese patients with cutaneous T-cell lymphoma (CTCL). This study aimed to measure the overall HRQoL and economic burden of CTCL patients with mycosis fungoides (MF) and Sezary syndrome (SS) subtypes in China.

METHODS: A cross-sectional survey was conducted from 21 July 2022 to 18 August 2022. Eligible participants were recruited from specialty or general hospitals across China, and each patient was an adult with a clinically confirmed diagnosis of either MF or SS. All participants were asked to complete a paper-based questionnaire that assessed HRQoL and self-reported annual economic burden. Validated instruments in Chinese, specifically the EQ-5D-5L, FACT-G, and Skindex-29, were used to assess HRQoL. As for self-reported economic burden, it was investigated from the societal perspective, as the direct medical costs, direct non-medical costs, and productivity loss were all calculated.

RESULTS: Total of 44 patients in 19 provinces of China were included, with 40 patients diagnosed with MF and 4 with SS. 59% were male, with a mean age of 39.7 years (ranged from 19 to 74 years). As for HRQoL measures, EQ-5D China time trade-offs were 0.76 (SD 0.18), the overall score for FACT-G was 60.6 (SD 11.8), and the overall score for Skindex-29 was 47.7 (SD 29.4). As for economic burden, the annual per capita cost for CTCL patients was CNY 77,655 (USD 10,864), greatly exceeding the annual disposable income in 2021 (CNY 35,128, equals USD 4,901). Direct medical cost, direct non-medical cost and indirect cost was CNY 55,303 (USD 7,737), CNY 6,975 (USD 976) and CNY 17,527 (USD 2,452), respectively.

CONCLUSIONS: These findings suggested that CTCL has compromised patients’ quality of life and posed a substantial economic burden, further underscoring the potential societal benefit of timely diagnosis and effective disease management measures.