Current measures are not sufficient: an interview-based qualitative assessment of quality of life in cutaneous T-cell lymphoma.

BACKGROUND: Cutaneous T-cell lymphoma (CTCL) negatively impacts quality of life (QoL), but existing QoL questionnaires may not comprehensively reflect patients' experience. OBJECTIVES: To identify the aspects of QoL that are most meaningful to patients with CTCL and to evaluate existing QoL instruments in this context. METHODS: Semistructured interviews were conducted between May and June 2019 using purposive sampling of patients with CTCL. Data were analysed by an inductive thematic approach using Dedoose Version 8.0.35. RESULTS: One-on-one interviews lasting a median of 43 min were completed by 18 patients [median age 62 years (interquartile range 52-70); 39% advanced-stage (IIB-IV)]. Itch was the most common clinical symptom reported (16 of 18 patients), followed by pain (12 of 18), skin breaks (11 of 18) and skin flaking (10 of 18). Eleven patients reported that their symptoms interfered with sleep, which impacted daily functioning. Patients also noted a lack of understanding of the disease in the community and felt uncertain (12 of 18), depressed (11 of 18), suicidal (four of 18) and hopeless (nine of 18). Nearly all patients (17 of 18) reported a sense of 'otherness' (not feeling 'normal' or 'like themselves'), and most patients (16 of 18) specifically mentioned concern about their physical appearance. Patients also noted substantial treatment burden. Salient patient concerns, including individual clinical symptoms, concern about appearance and problems with sleep, were not adequately or consistently represented in generic, skin-specific or CTCL-specific QoL measures. CONCLUSIONS: Incorporating the concerns and priorities that distinguish patients with CTCL from other patient populations will be of paramount importance in developing a comprehensive CTCL-specific measure of QoL that adequately captures patients' experience.

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.

Clinical severity measures and quality-of-life burden in patients with mycosis fungoides and Sézary syndrome: comparison of generic and dermatology-specific instruments.

BACKGROUND: Given the severe symptom burden and chronic nature of mycosis fungoides (MF) and Sézary syndrome (SS), effective assessment of quality of life (QoL) is essential to guiding patient-centred care in this population. In this study, we aim to provide a comprehensive assessment of QoL in early- and advanced-stage MF/SS and to assess the correlation of traditional measures of clinical severity with QoL measures. METHODS: Between July 2017 and April 2019, outpatients at an academic medical centre with either MF/SS (n = 115) or general dermatology concerns (n = 115) completed generic and dermatology-specific QoL instruments [Health Utilities Index Mark 3 (HUI3), RAND 36-Item Short-Form Health Survey (SF-36), Skindex-29, visual analogue scale for itch (VAS itch) and 5-D pruritus scale]. The mean scores of MF/SS patients were compared to that of controls using multivariable regression models adjusted for demographics and medical comorbidities. Cluster analysis of the QoL instruments and clinical severity measures (e.g. stage and body-surface-area involvement) was performed. RESULTS: Patients with MF/SS scored significantly worse than controls on all QoL instruments used, with advanced-stage (IIB-IVB) disease having the worst QoL impairment. Early-stage (IA-IIA) and advanced-stage MF/SS patients had significantly reduced overall health status (HUI3; P < 0.05), with largest decrements in social functioning and usual role functioning due to physical and emotional health (SF-36; all P < 0.05). MF/SS had significantly worse skin-specific impairment than controls, with advanced-stage disease reporting the most severe skin-specific burden (Skindex-29, P < 0.05). Clinical severity measures had a weak correlation with generic (|rs | = 0.02-0.27) and moderate correlation with dermatology-specific instruments (|rs | = 0.41-0.53). CONCLUSIONS: MF/SS have a significant impact on multiple domains of patients' QoL, including social, emotional and physical functioning. Current clinical measures do not adequately address QoL outcomes, underscoring the need for integrating formal disease-specific QoL assessment into the routine evaluation of MF/SS patients.