As is well known, primary cutaneous t-cell lymphomas has a chronic course with frequent relapses and patients may go through the stages of patches, plaques, tumors, or erythroderma and also multiple treatments are often needed.1,2 The presence of these lesions, often extensive and visible, frequently has a detrimental effect on physical appearance, negatively affecting personal and work relationships.3,4 On the other hand, the intense and sometimes irrepressible pruritus3 that may sometimes be associated with these entities also clearly results in the deterioration of quality of life in patients with CTCL.3

Quality of life impact in CTCL has been evaluated in few occasions.4 Thus, we initiated this study with the goal of determining the degree to which the quality of life is affected in patients with this diagnosis. We developed a descriptive, cross sectional, and analytical study in which we asked patients with CTCL who availed themselves of our hospital's Cutaneous Lymphoma Unit during the period between December of 2015 and July of 2016 to complete the Dermatology Quality of Life Index questionnaire (DLQI) in its Spanish version (upon authorization from its authors). This test has a minimum total result of 0 points (null impact on quality of life) and a maximum of 30 (extreme impact), and it analyzes the effect of the disease on quality of life in the last 7 days.5 The patients and their results are classified according to lymphoma subtype, stage, sex, age, and other parameters. The statistical analysis was conducted using the SPSS-16 program in its Spanish version, and statistical significance was set at P<0.05 (Mann-Whitney test).

We included 53 patients with CTCL, whose average age was 57.4 years, 71.6% (38) being men as compared to 28.3% (15) women. The most frequent subtype with 42 cases (79.2%) was classic mycosis fungoides (Figure 1). The average DLQI Test result of all patients was 3.87. Patients with MF in a stage equal to or less than IIA obtained an average result of 1.2, while those presenting an advanced stage showed an average result of 7.6 (moderate impact), these differences being statistically significant (P<0.05). Patients with lymphomatoid papulosis (all T1aN0M0B0) had an average result of 2.2 and the patient with CD30+ anaplastic large cell lymphoma an 8 (Table 1). Regarding the test analysis per question, the average values are summarized in Table 2.

Figure 1.

Distribution of each CTCL subtype.

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CTCLs progresses insidiously and chronically and the visibility of lesions could mar the physical appearance of patients. Moreover, the pruritus these patients suffer can also interfere with the overall function and performance of the individual. Nevertheless, in our study we have obtained a mean DLQI test value of 3.87 for patients with CTCL, which implies that the impact on quality of life by this disease is low, being null (DLQI mean 1.2) in patients with stage IIA MF or less and moderate (DLQI mean 7.6) in patients with advanced stage MF (IIB or greater). On the other hand, the mean value for the first DLQI questions, for a result of 0 to 3, was 2.11, much greater than the rest of the values for the other test questions, which allows us to confirm that pruritus is the factor that most determines decline in the quality of life for these patients (Table 2).

There is a similar study4 where a self-administrated questionnaire was answered by patients with CTCL. This study had only cualitative or dicotomic options to evaluate the psychosocial impact of the disease in different areas. They obtained high rates of patients affected in most areas studied (Social, laboral, sexual…), but the real intensity of each patient affectation not could be clarified.

As limitations of our study, we would like to highlight the cross-sectional design and the small sample of patients with lymphomatoid papulosis and CD30+ anaplastic large cell lymphoma. Even this study is only a “snapshot” in time, the minimal (cuantitative measured) decline in the quality of life for patients with CTCL indicated in our study is noteworthy. This probably may be due to characteristics of the disease itself, since in initial stages (those in which the patient remains for a prolonged period), the lesions are hardly visible and the symptomatology is tolerable. We also consider that, despite having found pruritus to be the factor that most determines the impact on quality of life in these patients, it was underrepresented in the DLQI (it only appears explicitly in one question), which would lead to a lower result regarding the true effect for the patient. Thus, specific and validated tests on the quality of life in patients with CTCL are needed to definitively know the degree to which the individuals suffering from it are affected.