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 Semi-structured interviews were conducted using purposive sampling of CTCL patients between May and June 2019. Data were analyzed by an inductive thematic approach using Dedoose Version 8.0.35. Results One-on-one interviews were completed by 18 patients (median age 62 (IQR 18); 39% advanced stage [IIB-IV]), lasting a median of 43 minutes. Itch was the most common clinical symptom reported (16/18 patients), followed by pain (12/18); skin breaks (11/18); and skin flaking (10/18). 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 (12/18), depressed (11/18), suicidal (4/18), and hopeless (9/18). Nearly all patients (17/18) reported a sense of "otherness" (not feeling "normal" or "like themselves"), and most patients (16/18) 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 these concerns and priorities that distinguish CTCL patients from other patient populations will be of paramount importance in developing a comprehensive CTCL-specific measure of QoL that adequately captures patients' experience.