Development and Evaluation of a Cancer Literacy Intervention to Promote Mammography Screening Among Navajo Women: A Pilot Study.

PURPOSE: Develop and evaluate a mammography intervention that provides hope about cancer prevention and treatment. DESIGN: Pilot randomized controlled trial. SETTING: Two communities on the Navajo Nation. PARTICIPANTS: Navajo women and support persons. INTERVENTION: Both groups received standard care: one home visit discussing mammography pros/cons and barriers. The treatment group received an intervention based on Navajo language via an additional home visit with health education materials (written and oral) in English and Navajo, including a Navajo Cancer Glossary with a new descriptive phrase for cancer. ANALYSIS: Between control and intervention conditions, we compared baseline sociodemographics; changes from baseline to 3 months on mammography completion and breast cancer literacy scores. MEASURES: (1) intervention feasibility; (2) self- and clinic-reported mammography screening completion; (3) breast cancer literacy. RESULTS: A total of 25 participants were randomly assigned (13 treatment, 12 control), with 7 support persons in each arm. Mean age was 53 years, 90% had a high school degree or higher, 86% spoke Navajo and English. At 3 months, 44% had a clinically verified mammogram. Mammography completion was 57% among those with a support person and 27% among those without (P = .14). Intervention women reported more breast cancer beliefs consistent with mammography (P = .015). CONCLUSIONS: Increases in breast cancer beliefs consistent with mammography show promise. Findings highlight a need to tailor education materials to Navajo culture/language and focus on enhancing support.

Should Researchers Offer Results to Family Members of Cancer Biobank Participants? A Mixed-Methods Study of Proband and Family Preferences.

BACKGROUND: Genomic analysis may reveal both primary and secondary findings with direct relevance to the health of probands' biological relatives. Researchers question their obligations to return findings not only to participants but also to family members. Given the social value of privacy protection, should researchers offer a proband's results to family members, including after the proband's death? METHODS: Preferences were elicited using interviews and a survey. Respondents included probands from two pancreatic cancer research resources, plus biological and nonbiological family members. Hypothetical scenarios based on actual research findings from the two cancer research resources were presented; participants were asked return of results preferences and justifications. Interview transcripts were coded and analyzed; survey data were analyzed descriptively. RESULTS: Fifty-one individuals (17 probands, 21 biological relatives, 13 spouses/partners) were interviewed. Subsequently, a mailed survey was returned by 464 probands, 1,040 biological family members, and 399 spouses/partners. This analysis highlights the interviews, augmented by survey findings. Probands and family members attribute great predictive power and lifesaving potential to genomic information. A majority hold that a proband's genomic results relevant to family members' health ought to be offered. While informants endorse each individual's choice whether to learn results, most express a strong moral responsibility to know and to share, particularly with the younger generation. Most have few concerns about sharing genetic information within the family; rather, their concerns focus on the health consequences of not sharing. CONCLUSIONS: Although additional studies in diverse populations are needed, policies governing return of genomic results should consider how families understand genomic data, how they value confidentiality within the family, and whether they endorse an ethics of sharing. A focus on respect for individual privacy-without attention to how the broad social and cultural context shapes preferences within families-cannot be the sole foundation of policy.

Patterns of clinical response to PSA elevation in American Indian/Alaska Native men: a multi-center pilot study.

OBJECTIVE: To assess clinical treatment patterns and response times among American Indian/Alaska Native men with a newly elevated PSA. METHODS: We retrospectively identified men ages 50-80 receiving care in one of three tribally-operated clinics in Northern Minnesota, one medical center in Alaska, and who had an incident PSA elevation (> 4 ng/ml) in a specified time period. A clinical response was considered timely if it was documented as occurring within 90 days of the incident PSA elevation. RESULTS: Among 82 AI/AN men identified from medical records with an incident PSA elevation, 49 (60%) received a timely clinical response, while 18 (22%) had no documented clinical response. CONCLUSIONS: One in five AI/AN men in our study had no documented clinical action following an incident PSA elevation. Although a pilot study, these findings suggest the need to improve the documentation, notification, and care following an elevated PSA at clinics serving AI/AN men.

Assessing follow-up care after prostate-specific antigen elevation in American Indian / Alaska Native Men: a partnership approach.

BACKGROUND: Although many studies conducted among American Indian and Alaska Native (AI/AN) populations may help to advance medical science and lead to improvements in health and health care, historically few have endeavored to share their findings, benefits, and/or expected outcomes with the communities in which they are conducted. This perceived lack of responsiveness has contributed to a perception in some AI/AN communities that researchers are disrespectful and may not make community needs a priority. OBJECTIVES: In the context of a study assessing the care received by AI/AN men with incident elevated prostate-specific antigen (PSA) levels, this paper describes our experience building collaborative relationships, planning, conducting analyses, and disseminating findings with four AI/AN communities. METHODS: We established formal partnerships with three Northern Plains AI communities and one AN tribal health organization, convened a 12-member Community Advisory Board (CAB), and obtained study approvals from all necessary tribal and institutional review bodies before implementing our study. A menu of options for study implementation was given to key collaborators at each site. CAB members and collaborating tribes contributed to each phase of the study. After data analysis, results were shared with tribal and institutional leaders. LESSONS LEARNED: Face-to-face communication, flexibility, and adaptability, as well as clearly defined, respectful roles contributed to the success of the study on the part of both the researchers and community partners. CONCLUSIONS: This study demonstrates the importance and feasibility of forging collaborative relationships with AI/AN community leaders in regions of Alaska and the Northern Plains in cancer control initiatives for AI/AN men.

Development and pilot evaluation of Native CREST-a Cancer Research Experience and Student Training program for Navajo undergraduate students.

The Mayo Clinic Cancer Center and Diné College received funding for a 4-year collaborative P20 planning grant from the National Cancer Institute in 2006. The goal of the partnership was to increase Navajo undergraduates' interest in and commitment to biomedical coursework and careers, especially in cancer research. This paper describes the development, pilot testing, and evaluation of Native CREST (Cancer Research Experience and Student Training), a 10-week cancer research training program providing mentorship in a Mayo Clinic basic science or behavioral cancer research lab for Navajo undergraduate students. Seven Native American undergraduate students (five females, two males) were enrolled during the summers of 2008-2011. Students reported the program influenced their career goals and was valuable to their education and development. These efforts may increase the number of Native American career scientists developing and implementing cancer research, which will ultimately benefit the health of Native American people.

Spiritual well-being and quality of life of women with ovarian cancer and their spouses.

BACKGROUND: There is little research on the quality of life (QOL) and spiritual well-being (SWB) of women diagnosed with ovarian cancer and their spouses. OBJECTIVE: We compared the SWB and QOL of these women and their spouses over a 3-year period. METHODS: This is a descriptive, longitudinal study involving 70 women with ovarian cancer and 26 spouses. Questionnaires were completed postoperatively and by mail 3, 7, 12, 18, 24, and 36 months later. All participants completed the Functional Assessment of Chronic Illness Therapy (FACIT)-Spiritual Well-Being-Expanded Version, Symptom Distress Scale, and open-ended questions about changes in their lives. Diagnosed women completed the FACIT-Ovarian and spouses the Caregiver Burden Interview and Linear Analog Self-Assessment scales. RESULTS: Women reported a high level of SWB over time. Spouses' SWB was significantly worse than the women's at 1 and 3 years (P ≤ .05). Insomnia, fatigue, and outlook/worry were problematic across time, with no significant differences between women and spouses except that women experienced more insomnia through 3 months (P = .02). Emotional well-being was compromised over time for the women but not their spouses until year 3. Physical and social well-being were compromised in spouses across time, while women's social well-being remained high and physical well-being was problematic only for the first year. LIMITATIONS: Limitations include a small spouse sample and, due to the disease process, attrition over time. CONCLUSIONS: Ovarian cancer has significant, but different, effects on women and spouses. Some effects are static, while others are not, which underscores the need for continual monitoring.

Perceptions of lung cancer risk and beliefs in screening accuracy of spiral computed tomography among high-risk lung cancer family members.

RATIONALE AND OBJECTIVES: Spiral computed tomography (SCT) is being evaluated as a screening tool for lung cancer. Our objective was to describe the effect of participation in SCT screening on participants' risk perceptions, worry, and expectations regarding the accuracy of the screening result. MATERIALS AND METHODS: We surveyed 60 individuals with lung cancer family history who were participating in an SCT study for the primary purpose of improving genetic linkage analysis at baseline, and then 1 and 6 months post-SCT. RESULTS: Of the 60 participants, 40 received normal results, 19 received non-negative results requiring follow-up, and 1 was diagnosed with lung cancer. At baseline, participants reported high levels of perceived lung cancer risk (64%), were concerned about developing lung cancer (94%), and the majority (84%) were not OK with receiving a non-negative SCT result when they really didn't have cancer. At 1 month post-SCT, those with a non-negative screen (n = 19) had lowered their expectations of test accuracy regarding non-negative results (54%) and reported increased levels in worry/concern (100%) and perceived risk (75%), but these effects diminished over time and returned almost to baseline levels at 6 months. CONCLUSIONS: Persons at very high empiric risk for lung cancer expect their SCT screening test to be accurate and present with high levels of lung cancer risk perception and worry/concern overall. Our findings suggest a need for risk counseling and discussion on the limitations of screening tests to accurately detect lung cancer.

Development and pilot evaluation of a cancer-focused summer research education program for [corrected] Navajo undergraduate students.

This paper describes the development and pilot testing of a 10-week cancer research education program for Navajo undergraduate students. The program was piloted at Diné College with 22 undergraduates (7 men, 15 women) in 2007 and 2008. Students completed a pre-post program survey assessing attitudes, opinions, and knowledge about research and about cancer. The program was found to be culturally acceptable and resulted in statistically significant changes in some of the attitudes and opinions about research and cancer. Combining all 13 knowledge items, there was a significant (p = 0.002) change in the mean total correct percent from baseline [70.3 (SD = 15.9)] to post-program [82.1 (SD = 13.1)]. The curriculum was adapted for a new cancer prevention and control course now offered at Diné College, enhancing sustainability. Ultimately, these efforts may serve to build capacity in communities by developing a cadre of future Native American scientists to develop and implement cancer research.

Centering prayer for women receiving chemotherapy for recurrent ovarian cancer: a pilot study.

PURPOSE/OBJECTIVES: To explore the feasibility of implementing centering prayer in chemotherapy treatment and assess its influence on mood, spiritual well-being, and quality of life in women with recurrent ovarian cancer. DESIGN: Descriptive pilot study. SETTING: Outpatient chemotherapy treatment suite in a large cancer center in the midwestern United States. SAMPLE: A convenience sample of 10 women receiving outpatient chemotherapy for recurrent ovarian cancer. METHODS: A centering prayer teacher led participants through three one-hour sessions over nine weeks. Data were collected prior to the first session, at the conclusion of the final session, and at three and six months after the final session. MAIN RESEARCH VARIABLES: Feasibility and influence of centering prayer on mood, spiritual well-being, and quality of life. FINDINGS: Most participants identified centering prayer as beneficial. Emotional well-being, anxiety, depression, and faith scores showed improvement. CONCLUSIONS: Centering prayer can potentially benefit women with recurrent ovarian cancer. Additional research is needed to assess its feasibility and effectiveness. IMPLICATIONS FOR NURSING: Nurses may promote or suggest centering prayer as a feasible intervention for the psychological and spiritual adjustment of patients with recurrent ovarian cancer.

Colorectal cancer screening education, prioritization, and self-perceived preparedness among primary care residents: data from a national survey.

BACKGROUND: Colorectal cancer (CRC) screening remains underutilized in the United States. We conducted a national survey of CRC screening education, prioritization, and self-perceived preparedness among resident physicians in Family Practice (FP), Internal Medicine (IM), and Obstetrics and Gynecology (OB/GYN) training programs. METHODS: Directors/administrators from 1085 FP, IM, and OB/GYN training programs were contacted by e-mail with a request to forward an invitation to participate in our Web-based CRC screening education survey to all residents in their program. Willing residents submitted responses in anonymous fashion. Data were analyzed using chi2 tests and analysis of variance methods. RESULTS: In total, 243 program directors/administrators forwarded our invitation, and 835 residents responded (384 FP, 266 IM, 177 OB/GYN, 8 undesignated specialty). Nearly all resident responders (89%) had received CRC screening education, but few content delivery methods were reported. Most felt at least somewhat comfortable or somewhat knowledgeable with respect to advising patients about CRC screening (90%), currently endorsed CRC screening guidelines (89%), and criteria used to identify familial CRC syndromes (50%). However, substantially fewer respondents reported feeling very comfortable or very knowledgeable in these areas (45%, 23%, and 5%, respectively). Program specialty, level of training, and gender were the strongest indicators of self-perceived preparedness. CONCLUSIONS: Although based on a relatively small sample of all FP, IM, and OB/GYN residents, these data suggest tangible opportunities to improve the CRC screening curriculum in primary care residency programs.

Colorectal cancer screening perceptions and practices: results from a national survey of gastroenterology, surgery and radiology trainees.

BACKGROUND: Colorectal cancer (CRC) screening in the United States is suboptimal. We conducted a national survey to learn about CRC screening perceptions and practices among trainees who perform CRC screening tests including those enrolled in Gastroenterology and Hepatology (GIH), General and Colorectal Surgery, and Diagnostic and Abdominal Radiology training programs. METHODS: Program directors/administrators (PDs/PAs) from 642 programs were contacted by e-mail with an invitation to forward our survey to trainees in their programs. Participating trainees then completed an anonymous, Web-based questionnaire. RESULTS: A total of 130/642 (20%) PDs/PAs forwarded our survey to their trainees, with responses received from 476 trainees (80 GIH, 261 surgery, 135 radiology). Colonoscopy was felt to be the best CRC screening test at reducing CRC mortality, with patient-related factors perceived as greater barriers than system-related factors. No single guideline was deemed very influential on CRC screening practices by most trainees. A total of 2 of 5 above-average risk patient profiles were not recognized by most trainees. Colonoscopy was selected as the preferred follow-up test for a positive CRC screening test by most trainees. However, 34% of respondents chose an option other than colonoscopy alone for follow-up of a positive fecal occult blood test. CONCLUSIONS: Based on data from this national survey of gastroenterology, surgery, and radiology trainees, opportunities exist for curricular changes that may help enhance current perceptions and practices of trainees who perform CRC screening tests.

Evaluation of a training program to prepare community health representatives to promote breast and cervix cancer screening among native american women.

BACKGROUND: Native American women have very poor 5-year breast and cervix cancer survival rates compared to other US population groups. We evaluated a training program that prepares community health representatives (CHRs) to promote prevention and early detection of these diseases. Two questions guided the evaluation: (1) Are CHRs an appropriate focus of training? and (2) Does training empower CHRs and, indirectly, their facilities to educate about breast and cervix cancer, promote screening, and teach breast self-exam skills to American Indian and Alaska Native women? METHODS: Twenty CHRs (3 Indian Health Service regions, 9 separate employers) responded to a telephone survey consisting of Likert scale and multiple option and short-answer questions. Analysis relied on descriptive statistics and measures of central tendency. RESULTS: By tenure, cultural and community membership, and ability to adapt to audience needs and setting demands, CHRs make appropriate training recipients. Training improves skills and their use and appears to increase employers' reliance on CHRs for screening promotion and education about cancer. Posttraining, more women hear and heed the screening message. CONCLUSIONS: CHRs are an appropriate focus of training. Training leads to increased screening-related activities and should be continued and expanded.

Evaluating the WEB training program for cancer screening in Native American women.

The Native Women Enjoying the Benefit (WEB) program trains nurses to perform breast and cervical cancer screening examinations for Native American women. Several evaluations have shown that the program improves nurses' knowledge and skills, and nurses value its positive impact on clinic, nurse, and patient behaviors. Beyond effectiveness, program longevity often rests upon equilibrium that results from alignment between a program's values and principles with those of its sponsoring organization and pertinent surrounding environments. We examined how Native WEB values align with those of its 2 most relevant environments-the medical institution (immediate environment) that sponsors it and the broader health care context (distal environment). We found that social justice views articulated in Catholic social teaching served as a convenient synthesis of the 2 environments' values and principles. We used this conception of social justice to determine whether the Native WEB program reflected the perspectives of its immediate and distal environments.

Outcomes of training nurses to conduct breast and cervical cancer screening of Native American women.

Native WEB (Women Enjoying the Benefit) is a unique training program for nurses employed by the Indian Health Service (IHS), tribal clinics, and other clinics with large, underserved populations. It teaches nurses breast and cervix cancer screening techniques and trains them to administer and maintain high-quality screening programs that include patient outreach, education, and training. We review American Indian (AI)/Alaska Native (AN) women's need for screening services, identify some of the obstacles to screening, and present our evaluation of the Native WEB's impact on clinics, nurses, and patients. Findings show that Native WEB training is associated with increased screening activity at all three levels.