Adaptation of the chronic disease self-management program for cancer survivors: feasibility, acceptability, and lessons for implementation.

Self-management in chronic disease has been shown to improve patient-reported and health care-related outcomes. However, relatively little information about its utility in cancer survivorship is known. We evaluated the feasibility and acceptability of the delivery of an adaptation of the evidence-based Chronic Disease Self-management Program (Stanford) called Cancer Thriving and Surviving (CTS). Triangulated mixed methods were used to capture baseline characteristics and post-program experiences using a combination of closed- and open-ended survey items; emergent coding and simple descriptive statistics were used to summarize the data. Twenty-seven workshops were delivered by 22 CTS leaders to 244 participants between August 2011 and January 2013 in a variety of settings (48 % community, 30 % health care, 22 % regional/community cancer center). Representing a variety of cancer types, about half the participants were 1-3 years post-diagnosis and 45 % were 4 or more years from diagnosis. Program attendance was high with 84 % of participants attending four or more of the six sessions in the workshop. Overall, 95 % of the participants were satisfied with the program content and leaders, and would recommend the program to friends and family. These results confirm the feasibility and acceptability of delivery of a high-fidelity, peer-led model for self-management support for cancer survivors. Expansion of the CTS represents a powerful tool toward improving health-related outcomes in this at-risk population.

Participation of minorities in cancer research: the influence of structural, cultural, and linguistic factors.

Overall, participation rates in cancer clinical trials are very low, ranging from 3 to 20% of eligible participants. However, participation rates are especially low among the socially disadvantaged and racial/ethnic minority groups that have been historically underrepresented in clinical research. Structural factors such as study duration, treatment or intervention schedule, cost, time, followup visits, and side effects represent more of a barrier to participation among these groups compared with white, non-Hispanics. Attitudes, beliefs, perceptions, and knowledge regarding clinical research, and cultural characteristics of underrepresented minorities pose additional barriers to participation. This article focuses on the structural, cultural, and linguistic factors that affect participation in clinical cancer research for each major U.S. racial/ethnic group. Low socioeconomic status, speaking a primary language other than English, differences in communication styles, mistrust of research and the medical system, fear, embarrassment, and lack of knowledge about the origin of cancer appear to have a negative impact on clinical cancer research participation rates. Much of the information about these factors comes from studies of cancer screening because little data is available on the factors that prevent and facilitate participation of minorities in clinical cancer trials specifically. Such research is needed, and, given the heterogeneity within and between minority populations, should occur in several different geographic settings and with as many different minority subpopulations as possible.

Influence of health care, cost, and culture on breast cancer screening: issues facing urban American Indian women.

BACKGROUND: Breast cancer is the second leading cause of cancer death among American Indian women. Southwestern American Indian women are more likely to have distant spread of the disease, and 5-year survival from breast cancer is poor in comparison to U.S. whites. Mortality from breast cancer could be reduced by more than 30% in American Indian women if current recommendations for screening were followed. METHODS: A random household cross-sectional survey was conducted among 519 adult American Indian women in Phoenix, Arizona. Logistic regression was used to identify predictors of recent clinical breast examination and mammogram among those women aged 40 years and older. RESULTS: Just more than half (53.0%) of the women surveyed reported they had received a clinical breast examination in the last year, and 35.7% indicated they had received a mammogram in the last 2 years. Access to care, knowledge of the examinations, and health beliefs were positively associated with breast cancer screening in the multivariate analyses. CONCLUSIONS: The cancer screening rates observed in urban American Indian women are far below current national estimates and Healthy People 2000 Objectives. This study confirms the limited access of urban Indians to preventive health services, and supports a role for cancer education in improving screening participation in this special population.

Pap smear screening among urban Southwestern American Indian women.

BACKGROUND: American Indian women have among the highest incidence and mortality rates of cervix cancer in the United States. The incidence of cancer of the cervix among American Indians is 19.5/100,000 versus 7.8/100,000 in U.S. whites, and comparison by geographic region/tribe indicates that the rate is four to six times higher in some tribes. Papanicolaou cytological testing (Pap smear) permits the detection of cervical lesions before they become cancerous, effectively reducing the incidence of cervical cancer by 75-90%. The American Cancer Society recommends a Pap smear every year beginning at age 18 years or when sexually active, and more frequent screening in high-risk populations. METHODS: A random household cross-sectional survey was conducted in Phoenix, Arizona, to assess cervical cancer screening rates among 519 adult urban American Indian women. Logistic regression was used to identify predictors of Pap smear use. RESULTS: Three-quarters (76.1%) of urban women American Indian surveyed received a Pap smear within the past 3 years, but only 49.5% received a Pap smear within the last year. Women over age 50 years were significantly less likely to have received a recent Pap smear in comparison to younger women. CONCLUSIONS: The results of this study indicate that limited access to health care and lack of knowledge about the procedure were important barriers to Pap smear use. Improving cervix cancer screening participation rates is an important step in reducing the disease burden in this high-risk population.

Cancer prevention among urban southwestern American Indian women: comparison to selected Year 2000 national health objectives.

PURPOSE: The health issues which have historically faced American Indians are related to infectious disease, but today many chronic diseases play a large role in the health status of this special population. For example, existing data indicate that American Indians have the poorest cancer survival of any group in the U.S. (34% vs. 50% for U.S. Whites). Regular participation in cancer screening and lifestyle factors such as smoking, diet, and alcohol have been found to significantly contribute to cancer risk. However, available information about these behaviors is sparse and suffers from limitations. The purpose of this study was to assess the prevalence of cancer risk behaviors and provider recommendation for cancer screening among urban American Indian women. METHODS: A random household cross-sectional survey was administered to 519 adult American Indian women in Phoenix, Arizona. Smoking and weight status, alcohol consumption, physical activity, and provider referral were assessed by self-report. RESULTS: The results indicate that weight (69.6% were overweight) and excessive alcohol consumption (12.1 reported chronic drinking) were significant health issues in this population. The prevalence of provider referral for smoking cessation (14.9% among ever smokers) and breast as well as cervical cancer screening (30.1% and 55.5%, respectively) were below the 75% level set forth in the Year 2000 Goals. CONCLUSIONS: The results of this study suggest that increased cancer prevention and control efforts are needed in this special population to address the link between diet, weight, and long-term disease prevention.