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Summary: Background: Cutaneous T‐cell lymphoma (CTCL) has been associated with considerable physical, psychological and financial burden. However, its impact on health‐related quality of life (QoL) and economic costs are not well studied. Objectives: To measure the QoL impact and financial burden of CTCL. Methods: A cross‐sectional survey of 67 patients with CTCL was conducted using the Ontario Health Utilities Index Mark 3 (HUI3) questionnaire. Normative population data (n = 3310) were obtained from the 2002–2003 Joint Canada/United States Survey of Health. Economic cost was estimated using quality‐adjusted life‐year (QALY) loss derived from HUI3 scores. Results: Patients with CTCL had significantly lower aggregate HUI3 scores than the general population (0·68 vs. 0·87, P < 0·001). Multivariable regression analysis adjusting for demographics and comorbidities showed CTCL was associated with significantly poorer performance overall (–0·13, 95% CI –0·21 to –0·06, P < 0·001) and in domains of speech (–0·03, 95% CI –0·05 to –0·01, P = 0·01), ambulation (–0·04, 95% CI –0·08 to 0·00, P = 0·03), emotion (–0·07, 95% CI –0·12 to –0·02, P = 0·01), and pain (–0·07, 95% CI –0·13 to –0·01, P = 0·03). These health utility decrements yielded an average loss of 1·48 QALYs per patient. Using a $50 000 per QALY willingness‐to‐pay threshold, CTCL was associated with an individual lifetime burden of $73 889 and U.S. societal burden of $2·86 billion. Conclusions: These findings suggest CTCL has a pervasive impact on QoL, comparable with debilitating conditions such as end‐stage renal disease. The substantial economic burden of CTCL underscores the potential societal benefit of prompt diagnosis and effective management. What's already known about this topic? Cutaneous T‐cell lymphoma is associated with physical, psychological and financial burden. What does this study add? The overall quality‐of‐life impact of cutaneous T‐cell lymphoma has not previously been measured using a generic health utility instrument.In this study, we compare the overall quality‐of‐life burden of patients with cutaneous T‐cell lymphoma with that of other populations and calculate the economic burden of the disease. Linked Comment: Rosenthal and Kim. Br J Dermatol 2020; 182:20–21. Plain language summary available online Respond to this article [ABSTRACT FROM AUTHOR] |
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