Summary Background Mycosis fungoides (MF) and Sézary Syndrome (SS) are the most common cutaneous T‐cell lymphomas. MF/SS is accompanied by considerable morbidity from pain, itching and disfigurement. Aim To identify factors associated with poorer health‐related quality of life (HRQoL) in patients newly diagnosed with MF/SS. Methods Patients enrolled into Prospective Cutaneous Lymphoma International Prognostic Index (PROCLIPI; an international observational study in MF/SS) had their HRQoL assessed using the Skindex‐29 questionnaire. Skindex‐29 scores were analysed in relation to patient‐ and disease‐specific characteristics. Results The study population consisted of 237 patients [60·3% male; median age 60 years, (interquartile range 49–70)], of whom 179 had early MF and 58 had advanced MF/SS. In univariate analysis, HRQoL, as measured by Skindex‐29, was worse in women, SS, late‐stage MF, those with elevated lactate dehydrogenase, alopecia, high modified Severity Weighted Assessment Tool and confluent erythema. Linear regression models only identified female gender (β = 8·61; P = 0·003) and alopecia (β = 9·71, P = 0·02) as independent predictors of worse global HRQoL. Item‐level analysis showed that the severe impairment in symptoms [odds ratio (OR) 2·14, 95% confidence interval (CI) 1·19–3·89] and emotions (OR 1·88, 95% CI 1·09–3·27) subscale scores seen in women was caused by more burning/stinging, pruritus, irritation and greater feelings of depression, shame, embarrassment and annoyance with their diagnosis of MF/SS. Conclusions HRQoL is significantly more impaired in newly diagnosed women with MF/SS and in those with alopecia. As Skindex‐29 does not include existential questions on cancer, which may cause additional worry and distress, a comprehensive validated cutaneous T‐cell lymphoma‐specific questionnaire is urgently needed to more accurately assess disease‐specific HRQoL in these patients. What's already known about this topic? Cross‐sectional studies of mixed populations of known and newly diagnosed patients with mycosis fungoides (MF)/Sézary syndrome (SS) have shown significant impairment in health‐related quality of life (HRQoL). Previous studies on assessing gender‐specific differences in HRQoL in MF/SS are conflicting. More advanced‐stage disease and pruritus is associated with poorer HRQoL in patients with MF/SS. What does this study add? This is the first prospective study to investigate HRQoL in a homogenous group of newly diagnosed patients with MF/SS. In patients newly diagnosed with MF/SS, HRQoL is worse in women and in those with alopecia and confluent erythema. MF/SS diagnosis has a multidimensional impact on patient HRQoL, including a large burden of cutaneous symptoms, as well as a negative impact on emotional well‐being.

Early findings suggest that patient navigation is a critical component in addressing cancer disparities in this population. The program has established trust with individual cancer patients, with the tribal councils, and with the general population on each of the three reservations of western South Dakota.

American Indian cancer patients received patient navigation services throughout cancer treatment. The patient navigation program provided culturally competent navigators to assist patients with navigating cancer therapy, obtaining medications, insurance issues, communicating with medical providers, and travel and lodging logistics. Data on utilization and trial enrollment were prospectively collected. Data for a historical control group of 70 American Indian patients who did not receive patient navigation services were used to compare treatment interruptions among those undergoing patient navigation during curative radiation therapy (subgroup of 123 patients). RESULTS: The median number of contacts with a navigator was 12 (range, 1-119). The median time spent with the navigator at first contact was 40 minutes (range, 10-250 minutes), and it was 15 minutes for subsequent contacts. Patients treated with radiation therapy with curative intent who underwent patient navigation had fewer days of treatment interruption (mean, 1.7 days; 95% confidence interval [CI], 1.1-2.2 days) than historical controls who did not receive patient navigation services (mean, 4.9 days; 95% CI, 2.9-6.9 days). Of the 332 patients, 72 (22%; 95% CI, 17%-26%) were enrolled on a clinical treatment trial or cancer control protocol. CONCLUSIONS: Patient navigation was associated with fewer treatment interruptions and relatively high rates of clinical trial enrollment among American Indian cancer patients compared with national reports.

Purpose To assess barriers to cancer care among Native Americans, whose health outcomes compare unfavorably with those of the general U. S. population. Methods and patients We undertook a comparative community-based participatory research project in which newly-diagnosed cancer patients were prospectively surveyed using novel scales for medical mistrust and satisfaction with health care. Socio-demographic information was obtained. Mean scale scores for mistrust and satisfaction were analyzed by race. Multi-variable models were used to adjust for income, education level, and distance lived from cancer care institute. Results Participation refusal rate was 38%. Of 165 eligible patients, 52 were Native American and 113 where non-Hispanic White. Native Americans expressed significantly higher levels of mistrust (p=.0001) and lower levels of satisfaction (p= .0001) with health care than Whites. In multivariable analyses, race was the only factor found to be significantly predictive of higher mistrust and lower satisfaction scores. Conclusion Native Americans exhibit higher medical mistrust and lower satisfaction with health care.

SYNOPSIS Objective Disparities in cancer-related health outcomes exist among Native Americans. This article assesses barriers to timely and effective cancer care among Native American cancer patients. Methods We conducted a community-based participatory survey of newly diagnosed cancer patients to assess their basic knowledge of cancer screening and their beliefs about cancer management. Sociodemographic and cancer-related information was obtained from medical records. Mean scores for correct answers to the screening knowledge battery were tabulated and analyzed by race/ethnicity and sociodemographic characteristics. Multivariable regression models were used to adjust for sociodemographic characteristics in evaluating the association between screening knowledge and race/ethnicity. Results The survey response rate was 62%. Of 165 patients, 52 were Native American and 113 were white. Native Americans with cancers for which a screening test is available presented with significantly higher rates of advanced-stage cancer (p=0.04). Native Americans scored lower on the cancer screening knowledge battery (p=0.0001). In multivariable analyses adjusting for age, gender, income, education level, employment status, and geographic distance from the cancer center, Native American race/ethnicity was the only factor significantly predictive of lower screening knowledge. Native Americans expressed more negative attitudes toward cancer treatment in some of the items regarding impacts and burden of cancer treatment. Conclusions Native American cancer patients presented with higher rates of advanced-stage disease for screening-detectable cancers, lower levels of basic cancer screening knowledge, and more negative attitudes about cancer treatment than white patients. Public health interventions regarding screening and cancer education are needed.