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Purpose: Mycosis fungoides (MF) is a malignancy of mature helper T-cells that initially invades the skin with clinical manifestations of widespread erythroderma, severe pruritus, and ulcerations. We conducted a study to evaluate the change in quality of life (QoL) of individuals diagnosed with MF. Also, we evaluated the racial disparity in QoL post-diagnosis. Experimental Design: A retrospective cross-sectional study was designed; potential study participants were identified from the Henry Ford Health System tumor registry. Eligibility criteria included (1) confirmed pathologic diagnosis of mycosis fungoides and (2) 18 years of age or older at the time of diagnosis. QoL was measured using two self-administered instruments, each comprised of four domains: emotional, functional, physical, and social/family well-being. Income was estimated from Census data. For each instrument, a composite score of the four sub-categories made up the overall QoL score, standardized to a scale of 0 to 100. Internal consistency of the QoL domains was assessed by Cronbach coefficient alpha values. The impact of ethnicity on QoL was analyzed by Student t-tests and Wilcoxon-Mann-Whitney tests. Results: Of the 123 individuals who participated in this study, 27.5% were African-American (AA), and 72.5% were Caucasian American (CA). At the time of diagnosis, the mean age for AAs was 56.0 years vs. 58.9 years for CAs (p=0.355). The estimated mean annual income for AAs was significantly lower than CAs (p=0.0005). There were no statistically significant differences between AAs and CAs by age, gender, or stage at first diagnosis. However, at the time of the last treatment, 31.3% AAs vs. 16.3% CAs were classified as stage II or higher (p=0.047). Although more CAs reported a positive change and AAs reported a negative change in emotional well-being between the first diagnosis and the last treatment, the difference was not statistically significant. Both ethnic groups reported a positive change in physical and functional well-being scores, while scores for social/family well-being declined for both ethnic groups. Conclusions: Our preliminary analysis suggests that there was no statistically significant difference in the QoL between CAs and AAs. However, more AAs reported a decrease in QoL, while more CAs reported an overall increase in QoL between the time of the first diagnosis and the last treatment. The self-reported change in QoL may be a function of cultural values and/or progression of the disease among AA patients.

[Proc Amer Assoc Cancer Res, Volume 45, 2004]