Health-related quality of life and economic implications of cutaneous T-cell lymphoma

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.