Physical disfigurement, cost of care, functional capacity, management of symptoms, and lifespan can all affect health-related quality of life (HRQOL) for patients with cutaneous T-cell lymphoma (CTCL). However, these factors are not regularly assessed in clinical practice or trials, according to a commentary in the British Journal of Dermatology.1 Furthermore, the use of a generic HRQOL questionnaire in CTCL has revealed a greater deterioration in HRQOL in patients with the disease than in patients undergoing hemodialysis, patients with diabetes, and patients across all cancer types.1,2

HRQOL, considered by the American Society of Clinical Oncology as second to overall survival for assessing efficacy of treatment, can be difficult to implement uniformly, possibly due to a lack of agreement over which questionnaires or how many should be used. The issue in CTCL is global, with instruments specific for pruritis, skin, and general oncology variably used. This heterogeneity can limit data comparisons, and using skin-specific instruments, such as Skindex-29, can impede comparison with diseases not of the skin.1,2

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A total of 67 patients with CTCL enrolled in the study and completed the questionnaire, and their results were compared with results from 3310 people in the general population.2

Advanced disease stage, female sex, Sézary syndrome subtype, and therapy with systemic steroids or interferon are all prognostic of inferior HRQOL in patients with CTCL.1 Although the patient population in this study primarily had early-stage disease (74.6% had disease stage less than IIB), was more than half male (52.2%), and primarily had non-Sézary syndrome subtype (85.1%) — all factors associated with favorable HRQOL — the HRQOL was inferior to that of patients with debilitating and chronic diseases and patients across all cancer types.2

Economic analysis using quality-adjusted life-year (QALY) loss from the score from the health utilities instrument. Patients with CTCL experienced an average loss of 1.48 QALYs. At a willingness-to-pay threshold of $50,000 per QALY, CTCL was correlated with an individual lifetime burden of $73,889 and a societal burden of $2.86 billion. The researchers explained that this significant economic burden highlights the potential benefits of prompt diagnosis and efficacious treatment and management.2

“These findings demonstrate the significant impact HRQOL has on all patients with CTCL,” wrote the authors of the commentary. They continued, “Evaluation of HRQOL in all patients with CTCL is important, ideally using a combination of instruments, to give clinicians insight into the daily challenges of living with CTCL and to help provide patients with itch/symptom relief, psychological support, and cost-appropriate treatments.”1


  1. Rosenthal JM, Kim EJ. Health-related quality of life in cutaneous T-cell lymphoma: examining all sides of the issue [Commentary; published online September 2, 2019]. Br J Dermatol. doi:10.1111/bjd.18428
  2. Semenov YR, Rosenberg AR, Herbosa C, Mehta-Shah N, Musiek MS. Health-related quality of life and economic implications of cutaneous T-cell lymphoma. Br J Dermatol.

This article originally appeared on Oncology Nurse Advisor