Health‐related quality of life in cutaneous T‐cell lymphoma: A cross‐sectional survey study

BACKGROUND: Patients with cutaneous T‐cell lymphoma (CTCL) often have indolent but symptomatic disease. OBJECTIVE: Assessment of the health‐related quality of life (HRQoL) of patients with CTCL. METHODS: Cross‐sectional survey study. HRQoL was measured by Skindex‐16 and FACT‐G. RESULTS: A total of 372 responses were received; 80 incomplete/ineligible responses were excluded. A majority of respondents identified as white (87%; 250/288) and female (67%; 193/286) with a mean age of 57 ± 14 years. Most patients had early‐stage (IA–IIA) (74%; 162/203) mycosis fungoides (87%; 241/279). There were 33 (12%; 33/279) patients with Sézary syndrome. Mean itch score (visual analogue scale; VAS) was 3.2 ± 2.8, overall; 2.7 ± 2.6 for early, and 4.2 ± 2.9 for advanced disease (p = 0.008). Thirty‐eight percent (108/284) and 24% (69/284) reported head/neck and groin/genital involvement, respectively. Overall HRQoL was 46 ± 27 (Skindex‐16) and 71 ± 19 (FACT‐G), with worse HRQoL for patients with advanced versus early disease (Skindex‐16: 67 vs. 40; p=<0.001, FACT‐G: 62 vs. 76; p = 0.001). Predictors of worse HRQoL included head/neck, hand/foot or groin/genital involvement, younger age and spending >15 min daily treating CTCL. LIMITATIONS: Include anonymous survey methodology, underrepresentation of certain CTCL subtypes and non‐white respondents. CONCLUSIONS: Patients with CTCL, particularly those with advanced disease or involvement of the head/neck, acral or groin/genital sites, experience significant impact on HRQoL.