Available questionnaires do not cover important aspects of quality of life of patients with cutaneous T-cell lymphoma: evaluation of the quality of life of Polish patients with cutaneous T-cell lymphoma.

Abstract

Introduction: Cutaneous T-cell lymphoma (CTCL) has a significant impact on patients' quality of life (QoL). Most studies have measured QoL using validated questionnaires that are not specific to patients with CTCL. Furthermore, clinician-perceived QoL in CTCL patients has never been measured before.

Aim: The quantitative and qualitative evaluation of QoL of the Polish CTCL patients and doctors and checking the impact of the disease on their daily functioning.

Material and methods: Structured anonymous questionnaires were administered to Polish patients diagnosed with CTCL and their physicians. The questionnaire was designed on the basis of interviews with two physicians, experts in the field, and 2 patients. Patients completed the questionnaire and the Skindex-29 survey in person.

Results: Our patients have been moderately affected in the physical domain and significantly affected in the emotional and functional domains according to Skindex-29, whereas according to the results of our questionnaire, the most affected domains are the physical and emotional domains. The biggest inconvenience for patients is commuting to another city and time spent on visits and tests. We are the first to report that 57% of patients try to distract themselves from thinking about the diagnosis, 55% hope for a normal life and 64% miss previous lifestyle and/or opportunities.

Conclusions: Polish physicians underestimated the impact of the disease on insomnia, sleep disturbance and patient independence. Although the Skindex-29 is a widely used and validated tool, it may not fully capture all aspects of QoL in patients with CTCL.