Caren J. Frost

A survey of women obtaining emergency contraception: are they interested in using the copper IUD?

BACKGROUND This study aims to determine if women presenting for emergency contraception (EC) at family planning clinics may be interested in using the copper intrauterine device (IUD) for EC. STUDY DESIGN This convenience sample survey was offered to women who presented for EC at four participating clinics in urban Utah. Anonymous written questionnaires were distributed. The outcome variable of interest was interest in using the copper IUD for EC. RESULTS Of survey respondents, 320 (34.0%) of 941 said they would be interested in an EC method that was long term, highly effective and reversible. Interested women were not significantly different from noninterested women in relation to age, marital status, education, household income, gravidity, previous abortions, previous sexually transmitted infections (STIs) or relationship status. One hundred twenty women (37.5% of those interested or 12.8% of all those surveyed) would wait an hour, undergo a pelvic exam to get the method and would still want the method knowing it was an IUD. However, only 12.3% of these women could also pay

Decision making with uncertain information: learning from women in a high risk breast cancer clinic.

350 or more for the device. Multivariable regression found the following predictors of interest in the IUD among EC users: non-Hispanic minorities (OR=2.12, 95% CI=1.14-3.93), desire to never be pregnant in the future (OR=2.87, 95% CI=1.38-5.66) and interest in adoption (OR=1.96, 95% CI=1.00-5.73) or abortion (OR=2.68, 95% CI=1.24-4.14) if pregnant when presenting for EC. CONCLUSION While one third of EC users surveyed at family planning clinics were interested in a long-term, highly effective method of contraception, only a small portion of all EC users may be interested in the copper IUD for EC. Cost is a potential barrier.

A qualitative exploration of emergency contraception users' willingness to select the copper IUD

Patients and practitioners may believe that clinically validated laboratory tests provide definitive information. Genetic counselors know this is not always so, and the possibility of inconclusive genetic test results is often discussed in the pretest counseling session. This added discussion topic prolongs the process of genetic counseling, but if there is inadequate patient understanding, patient frustration may be high when receiving a result of uncertain significance, and patients may make decisions about subsequent medical management based on incorrect assumptions. For patients/participants in a research setting, where the clinical validity of testing may be unclear, some patients/participants may still want to use test results to influence their medical management. This paper presents findings from a qualitative study wherein 15 women from the High Risk Breast Cancer Clinic at Utahs Huntsman Cancer Institute discussed how uncertainty regarding results affected their decision making. The women were randomly selected from 3 categories—women with test results of uncertain significance; women without cancer who have a mutation; and women who are members of high-risk families, but for whom no mutation was found. Study findings will be used in future studies to better understand how to improve communication regarding uncertain results, especially in a research environment.

Pancreatic Cancer Surveillance Among High-Risk Populations: Knowledge and Intent

BACKGROUND The copper T intrauterine device (IUD) is an effective but underutilized method of emergency contraception (EC). This study investigates the factors influencing a womans decision around which method of EC to select. STUDY DESIGN In-depth interviews with 14 IUD and 14 oral EC users aged 18-30 years accessing public health clinics. RESULTS Emergency contraception users associated long-term methods of contraception with long-term sexual relationships. Women were not aware of the possibility of using the copper IUD for EC. Cost was identified as a major barrier to accessing IUDs. Perceived side effects and impact on future pregnancies further influenced the EC method a participant selected. CONCLUSIONS Women think about contraception in the context of each separate relationship and not as a long-term individual plan. Most women were unaware of the copper IUD for EC. Furthermore, there is little discussion between women and their health-care providers around EC.

The LEGACY Girls Study: Growth and Development in the Context of Breast Cancer Family History.

Pancreatic cancer is the fourth most common cancer in both men and women in the United States. It has the lowest survival rate of all cancers, largely due to the presence of non-specific symptoms, leading to diagnosis at advanced stages. While the majority of cases of pancreatic cancer are sporadic, up to 10% may be associated with an inherited predisposition. Currently, there is no standard screening protocol for pancreatic cancer, although this will change in the future as technology improves. Additionally, there is little information regarding the perceptions and intent to screen for pancreatic cancer among those with an increased risk due to a hereditary cancer predisposition syndrome, which was the objective of this study. Focus groups and individual telephone interviews were conducted, with questions focused on knowledge about pancreatic cancer and screening, perceived motivators, and perceived barriers related to each of the screening techniques currently available. Participants were recruited from the High Risk Breast Cancer and Pancreatic Cancer Registries at Huntsman Cancer Institute. The findings of this study indicated that individuals from these high-risk groups have low knowledge levels of pancreatic cancer screening, despite their desire for this information. Motivation to undergo a particular screening technique is related to whether the test is recommended by a physician, cost, degree of invasiveness, and comfort level. This information is useful to genetics professionals who counsel at-risk individuals, physicians who formulate patient care plans, and translational researchers who are developing pancreatic screening methods.

Psychosocial adjustment in school-age girls with a family history of breast cancer

Background: Although the timing of pubertal milestones has been associated with breast cancer risk, few studies of girls’ development include girls at increased breast cancer risk due to their family history. Methods: The Lessons in Epidemiology and Genetics of Adult Cancer from Youth (LEGACY) Girls Study was initiated in 2011 in the USA and Canada to assess the relation between early life exposures and intermediate markers of breast cancer risk (e.g., pubertal development, breast tissue characteristics) and to investigate psychosocial well being and health behaviors in the context of family history. We describe the methods used to establish and follow a cohort of 1,040 girls ages 6–13 years at baseline, half with a breast cancer family history, and the collection of questionnaire data (family history, early life exposures, growth and development, psychosocial and behavioral), anthropometry, biospecimens, and breast tissue characteristics using optical spectroscopy. Results: During this initial 5-year phase of the study, follow-up visits are conducted every 6 months for repeated data and biospecimen collection. Participation in baseline components was high (98% for urine, 97.5% for blood or saliva, and 98% for anthropometry). At enrollment, 77% of girls were premenarcheal and 49% were at breast Tanner stage T1. Conclusions: This study design allows thorough examination of events affecting girls’ growth and development and how they differ across the spectrum of breast cancer risk. A better understanding of early life breast cancer risk factors will be essential to enhance prevention across the lifespan for those with and without a family history of the disease.

Assessing cultural appropriateness of three translated cancer-related fatigue instruments

OBJECTIVE: Understanding how young girls respond to growing up with breast cancer family histories is critical given expansion of genetic testing and breast cancer messaging. We examined the impact of breast cancer family history on psychosocial adjustment and health behaviors among >800 girls in the multicenter LEGACY Girls Study. METHODS: Girls aged 6 to 13 years with a family history of breast cancer or familial BRCA1/2 mutation (BCFH+), peers without a family history (BCFH–), and their biological mothers completed assessments of psychosocial adjustment (maternal report for 6- to 13-year-olds, self-report for 10- to 13-year-olds), breast cancer–specific distress, perceived risk of breast cancer, and health behaviors (10- to 13-year-olds). RESULTS: BCFH+ girls had better general psychosocial adjustment than BCFH– peers by maternal report. Psychosocial adjustment and health behaviors did not differ significantly by self-report among 10- to 13-year-old girls. BCFH+ girls reported higher breast cancer–specific distress (P = .001) and were more likely to report themselves at increased breast cancer risk than BCFH– peers (38.4% vs 13.7%, P < .001), although many girls were unsure of their risk. In multivariable analyses, higher daughter anxiety was associated with higher maternal anxiety and poorer family communication. Higher daughter breast cancer–specific distress was associated with higher maternal breast cancer-specific distress. CONCLUSIONS: Although growing up in a family at risk for breast cancer does not negatively affect general psychosocial adjustment among preadolescent girls, those from breast cancer risk families experience greater breast cancer–specific distress. Interventions to address daughter and mother breast cancer concerns and responses to genetic or familial risk might improve psychosocial outcomes of teen daughters.

A gender-based approach to developing a healthy lifestyle and healthy weight intervention for diverse Utah women

The purpose of this study was to evaluate the cultural appropriateness (ie, semantic equivalence, content equivalence, and conceptual equivalence) of 3 translated fatigue instruments (the Cancer Fatigue Scale, the Fatigue Symptom Inventory, and the Schwartz Cancer Fatigue Scale-revised) by using 2 phases: (a) establishment of semantic and content equivalencies by the rigorous process of translation and back-translation, and (b) evaluation of content equivalence and conceptual equivalence by testing on monolingual subjects with the translated fatigue scales and a questionnaire with fatigue terms list and open-ended questions. Convenience sampling was used to recruit subjects at a chemotherapy treatment center for outpatients in Taiwan. The results indicated that the content in the 3 scales were relevant to the experience of fatigue among Taiwanese from the view of patients, but only the fatigue domains in the Cancer Fatigue Scale-Chinese version was similar to the original construct based on the exploratory factor analysis. However, the results for examining the content equivalencies by the fatigue terms list showed that only 4 items in the list were used to describe fatigue by more than 50% of the patients. Therefore, the contents of the chosen scales might not represent the whole concept of fatigue in Taiwan. Exploration of the content and construct of fatigue in Taiwan and further testing of the translated scales are recommended. In addition, the result in this study is helpful for clinical nurses to understand expressions of fatigue in cancer patients within the Chinese culture but the meaning of fatigue still needs to be further explored.

Reframing the View of Women's Health in the United States: Ideas from a Multidisciplinary National Center of Excellence in Women's Health Demonstration Project

Utah women from some cultural minority groups have higher overweight/obesity rates than the overall population. We utilized a gender-based mixed methods approach to learn about the underlying social, cultural and gender issues that contribute to the increased obesity risk among these women and to inform intervention development. A literature review and analysis of Utahs Behavioral Risk Factor Surveillance System data informed the development of a focus group guide. Focus groups were conducted with five groups of women: African immigrants from Burundi and Rwanda, African Americans, American Indians/Alaskan Natives, Hispanics/Latinas, and Pacific Islanders. Six common themes emerged: (1) health is multidimensional and interventions must address health in this manner; (2) limited resources and time influence health behaviors; (3) norms about healthy weight vary, with certain communities showing more preference to heavier women; (4) women and men have important but different influences on healthy lifestyle practices within households; (5) women have an influential role on the health of families; and (6) opportunities exist within each group to improve health. Seeking insights from these five groups of women helped to identify common and distinct cultural and gender themes related to obesity, which can be used to help elucidate core obesity determinants.

Measuring the Diversity Awareness of Social Work Students: The Dual Perspective Inventory

Caren J Frost1*, Patricia A Murphy2, Janet M Shaw3, Kirtly P Jones4, Michael Varner4, Nicole Mihalopoulos5, Erica Lake6, Sally Patrick6, Leanne Johnston4 and Kathleen B Digre7 1College of Social Work, University of Utah, USA 2College of Nursing, University of Utah, USA 3College of Health, University of Utah, USA 4Department of Obstetrics and Gynecology, University of Utah, USA 5Pediatrics Adolescent Medicine, University of Utah, USA 6Spencer S. Eccles Health Sciences Library, University of Utah, USA 7Department of Neurology, University of Utah, USA