Abstract
BACKGROUND: The health-related quality of life (HRQoL), economic burden, and diagnostic and treatment status of Chinese patients with mycosis fungoides (MF) and Sézary syndrome (SS) remain largely unknown. This study assessed patient characteristics, HRQoL, and economic burden among Chinese patients with MF and SS through a cross-sectional survey. METHODS: Eligible patients were aged ≥18 years with a pathologically confirmed diagnosis of MF or SS and were either currently receiving or had received disease-specific treatment within the past year. Patients completed a paper-based quantitative survey covering four components: patient demographics, diagnosis and treatment journey, economic burden, and HRQoL instrument. RESULTS: Between July 21, 2022, and October 24, 2022, 61 eligible patients participated in this study, of whom 91.8% (56/61) had MF and 8.2% (5/61) had SS. The total cost for patients with MF and SS was Chinese Yuan (CNY) 86,729 (US Dollar [USD] 12,425). The total cost for patients with early-stage disease was significantly lower than that for patients with advanced-stage disease (CNY 43,379 vs. 128,681, P < 0.001). The direct cost for MF and SS patients was CNY 72,467 (USD 10,382). The direct cost for patients with early-stage disease was significantly lower than that for patients with advanced-stage disease (CNY 29,018 vs. 114,514, P < 0.001). The direct medical cost for MF and SS patients was CNY 65,524 (USD 9387). The direct medical cost for patients with early-stage disease was significantly lower than that for patients with advanced-stage disease (CNY 23,069 vs. 106,609, P < 0.001). Regarding HRQoL, the mean (standard deviation [SD]) score of Chinese time trade-off values for 5-level EQ-5D (EQ-5D-5L) health states was 0.79 (0.18) for all respondents. The mean utility score for advanced-stage patients was significantly lower than that of early-stage patients (advanced-stage: 0.73 [0.18] vs. early-stage: 0.84 [0.16], P = 0.010). On the Functional Assessment of Cancer Therapy-General (FACT-G) scale, the mean (SD) score for all patients with MF or SS was 61.3 (12.4). Advanced-stage patients had lower mean scores than early-stage patients, indicating poorer HRQoL (early-stage: 65.50 [13.48] vs. advanced-stage: 57.26 [9.96], P = 0.009). For the Skindex-29 instrument, the mean (SD) score was 43.4 (24.2). CONCLUSIONS: Chinese patients with MF or SS, especially advanced-stage patients, experience high economic burden and compromised HRQoL, which underscore the need for improved access to affordable treatments and supportive care measures to reduce the financial burden and enhance the well-being of these patients. Healthcare policies and interventions should prioritize early diagnosis and effective management to improve the treatment outcome and reduce its associated costs.