Childhood physical activity and pubertal timing: findings from the LEGACY girls study.

BACKGROUND: There is limited research on whether physical activity (PA) in early childhood is associated with the timing of pubertal events in girls. METHODS: We used data collected over 2011-16 from the LEGACY Girls Study (n = 984; primarily aged 6-13 years at study enrolment), a multicentre North American cohort enriched for girls with a breast cancer family history (BCFH), to evaluate if PA is associated with age at thelarche, pubarche and menarche. Maternal-reported questionnaire data measured puberty outcomes, PA in early childhood (ages 3-5 years) and total metabolic equivalents of organized PA in middle childhood (ages 7-9 years). We used interval-censored Weibull parametric survival regression models with age as the time scale and adjusted for sociodemographic factors, and we tested for effect modification by BCFH. We used inverse odds weighting to test for mediation by body mass index-for-age z-score (BMIZ) measured at study enrolment. RESULTS: Being highly active vs inactive in early childhood was associated with later thelarche in girls with a BCFH [adjusted hazard ratio (aHR) = 0.39, 95% CI = 0.26-0.59), but not in girls without a BCFH. In all girls, irrespective of BCFH, being in the highest vs lowest quartile of organized PA in middle childhood was associated with later menarche (aHR = 0.70, 95% CI = 0.50-0.97). These associations remained after accounting for potential mediation by BMIZ. CONCLUSION: This study provides new data that PA in early childhood may be associated with later thelarche in girls with a BCFH, also further supporting an overall association between PA in middle childhood and later menarche.

Maternal and prenatal factors and age at thelarche in the LEGACY Girls Study cohort: implications for breast cancer risk.

BACKGROUND: Earlier onset of breast development (thelarche) is associated with increased breast cancer risk. Identifying modifiable factors associated with earlier thelarche may provide an opportunity for breast cancer risk reduction starting early in life, which could especially benefit girls with a greater absolute risk of breast cancer due to family history. METHODS: We assessed associations of maternal pre-pregnancy body mass index (BMI), physical activity during pregnancy, gestational weight gain and daughters' weight and length at birth with age at thelarche using longitudinal Weibull models in 1031 girls in the Lessons in Epidemiology and Genetics of Adult Cancer from Youth (LEGACY) Girls Study-a prospective cohort of girls, half of whom have a breast cancer family history (BCFH). RESULTS: Girls whose mothers had a pre-pregnancy BMI of ≥25 and gained ≥30 lbs were 57% more likely to experience earlier thelarche than girls whose mothers had a pre-pregnancy BMI of <25 and gained <30 lbs [hazard ratio (HR) = 1.57, 95% CI: 1.16, 2.12]. This association was not mediated by childhood BMI and was similar in girls with and without a BCFH (BCFH: HR = 1.41, 95% CI: 0.87, 2.27; No BCFH: HR = 1.62, 95% CI: 1.10, 2.40). Daughters of women who reported no recreational physical activity during pregnancy were more likely to experience earlier thelarche compared with daughters of physically active women. Birthweight and birth length were not associated with thelarche. CONCLUSION: Earlier thelarche, a breast cancer risk factor, was associated with three potentially modifiable maternal risk factors-pre-pregnancy BMI, gestational weight gain and physical inactivity-in a cohort of girls enriched for BCFH.

Women's thoughts on receiving and sharing genetic information: Considerations for genetic counseling.

Indications for genetic testing for inherited cancer syndromes are expanding both in the academic and the community setting. However, only a fraction of individuals who are candidates for testing pursue this option. Therefore, it is important to understand those factors that impact the uptake of genetic testing in individuals affected and unaffected with cancer. A successful translation of genomic risk stratification into clinical care will require that providers of this information are aware of the attitudes, perceived risks and benefits, and concerns of individuals who will be considering testing. The purpose of this study was to assess beliefs, attitudes and preferences for genetic risk information, by personal characteristics of women affected and unaffected by breast cancer enrolled in the Breast Cancer Family Registry Cohort. Data for this analysis came from eight survey questions, which asked participants (N = 9,048, 100% female) about their opinions regarding genetic information. Women reported that conveying the accuracy of the test was important and were interested in information related to personal level of risk, finding out about diseases that could be treated, and information that could be helpful to their families. Young women were most interested in how their own health needs might be impacted by genetic test results, while older women were more interested in how genetic information would benefit other members of the family. Interest in how the genetic test was performed was highest among Asian and Hispanic women. Women affected with breast cancer were more likely to report feeling sad about possibly passing down a breast cancer gene, while unaffected women were more uncertain about their future risk of cancer. The variety of informational needs identified has implications for how genetic counselors can tailor communication to individuals considering genetic testing.

Body mass index rebound and pubertal timing in girls with and without a family history of breast cancer: the LEGACY girls study.

BACKGROUND: Heavier body mass index (BMI) is the most established predictor of earlier age at puberty. However, it is unknown whether the timing of the childhood switch to heavier BMI (age at BMI rebound) also matters for puberty. METHODS: In the LEGACY Girls Study (n = 1040), a longitudinal cohort enriched with girls with a family history of breast cancer, we collected paediatric growth chart data from 852 girls and assessed pubertal development every 6 months. Using constrained splines, we interpolated individual growth curves and then predicted BMI at ages 2, 4, 6, 8 and 9 years for 591 girls. We defined age at BMI rebound as the age at the lowest BMI between ages 2 and 8 years and assessed its association with onset of thelarche, pubarche and menarche using Weibull survival models. RESULTS: The median age at BMI rebound was 5.3 years (interquartile range: 3.6-6.7 years). A 1-year increase in age at BMI rebound was associated with delayed thelarche (HR = 0.90; 95% CI = 0.83-0.97) and menarche (HR = 0.86; 95% CI = 0.79-0.94). The magnitude of these associations remained after adjusting for weight between birth and 2 years, was stronger after adjusting for BMI at age 9, and was stronger in a subset of girls with clinically assessed breast development. CONCLUSIONS: Earlier BMI rebound is associated with earlier pubertal timing. Our observation that BMI rebound may be a driver of pubertal timing in girls with and without a family history of breast cancer provides insight into how growth and pubertal timing are associated with breast cancer risk.

Mothers' Diet and Family Income Predict Daughters' Healthy Eating.

INTRODUCTION: Understanding the degree to which parents may influence healthy behaviors may provide opportunities to intervene among populations at increased risk of diseases, such as breast cancer. In this study, we examined the association between daughters' healthy eating habits and family lifestyle behaviors among girls and their families by using baseline data from the LEGACY (Lessons in Epidemiology and Genetics of Adult Cancer from Youth) Girls Study. Our objective was to examine the relationship between daughters' healthy eating and family lifestyle behaviors and to compare these associations between families with and without a history of breast cancer. METHODS: We examined demographic and lifestyle data from a cohort of 1,040 girls aged 6 to 13 years from year 1 (2011) of the LEGACY study. Half had a family history of breast cancer (BCFH). We used mixed-effects linear regression to assess the influence of the mother and father's physical activity, family relationship scores, the mother's diet, the family's income, and the daughter's sports participation, age, body mass index (BMI), and race/ethnicity on the daughter's Healthy Eating Index (HEI) score. RESULTS: Daughters' healthy eating was significantly correlated with the mother's diet (r[668] = 0.25, P = .003) and physical activity (r[970] = 0.12, P = .002), the father's physical activity (r[970] = 0.08, P = .01), and the family income (r[854] = 0.13, P = .006). Additionally, the mother's diet (ß coefficient = 0.71, 95% CI, 0.46-0.88, P = .005) and family income (ß coefficient = 3.28, 95% CI, 0.79-5.78, P = .002) significantly predicted a daughter's healthy eating. Analyses separated by family history status revealed differences in these associations. In families without a history of breast cancer, only the mother's diet (ß coefficient = 0.62; 95% CI, 0.29-0.95; P = .001) significantly predicted the daughter's healthy eating. In families with a history of breast cancer, the mother's diet (ß coefficient = 0.73, 95% CI, 0.42-1.03, P = .006) and family income (ß coefficient = 6.24; 95% CI, 2.68-9.80; P = .004) significantly predicted a daughter's healthy eating. CONCLUSION: A mother's diet and family income are related to the daughter's healthy eating habits, although differences exist among families by family history of breast cancer.

Prepubertal Internalizing Symptoms and Timing of Puberty Onset in Girls.

Stressful environments have been associated with earlier menarche. We hypothesized that anxiety, and possibly other internalizing symptoms, are also associated with earlier puberty in girls. The Lessons in Epidemiology and Genetics of Adult Cancer From Youth (LEGACY) Girls Study (2011-2016) included 1,040 girls aged 6-13 years at recruitment whose growth and development were assessed every 6 months. Prepubertal maternal reports of daughter's internalizing symptoms were available for breast onset (n = 447), pubic hair onset (n = 456), and menarche (n = 681). Using Cox proportional hazard regression, we estimated prospective hazard ratios and 95% confidence intervals for the relationship between 1 standard deviation of the percentiles of prepubertal anxiety, depression, and somatization symptoms and the timing of each pubertal outcome. Multivariable models included age, race/ethnicity, study center, maternal education, body mass index percentile, and family history of breast cancer. Additional models included maternal self-reported anxiety. A 1-standard deviation increase in maternally reported anxiety in girls at baseline was associated with earlier subsequent onset of breast (hazard ratio (HR) = 1.22, 95% confidence interval (CI): 1.09, 1.36) and pubic hair (HR = 1.15, 95% CI: 1.01, 1.30) development, but not menarche (HR = 0.94, 95% CI: 0.83, 1.07). The association of anxiety with earlier breast development persisted after adjustment for maternal anxiety. Increased anxiety in young girls may indicate risk for earlier pubertal onset.

The limited use of US residual newborn screening dried bloodspots for health disparity research.

PURPOSE: State-run newborn screening programs screen nearly all babies born in the United States at the time of delivery. After newborn screening has been completed, some states store the residual dried bloodspots. It is unknown how they have been used to address health disparities-related research. METHODS: In 2017-2018, a scoping review was conducted to evaluate the extent, type, and nature of how residual dried bloodspots. The review included 654 eligible publications, worldwide, published before May 2017. A post hoc analysis of the US-based studies using residual dried bloodspots (n = 192) were analyzed. RESULTS: There were 32 (16.7%) articles identified that studied a condition of a known health disparity or focused on a key population: 25 studies assessed a disease or condition, 6 expressly enrolled a key population, and 1 study included both (i.e., heart disease and African American/Black). CONCLUSION: Excluding 12 studies that researched leukemia or a brain tumor, only 20 studies addressed a known health disparity, with 6 stating a specific aim to address a health disparity. This resource could be used to gain further knowledge about health disparities, but is currently underutilized.

Assessing patient readiness for personalized genomic medicine.

The Human Genome Project and the continuing advances in DNA sequencing technology have ushered in a new era in genomic medicine. Successful translation of genomic medicine into clinical care will require that providers of this information are aware of the level of understanding, attitudes, perceived risks, benefits, and concerns of their patients. We used a mixed methods approach to conduct in-depth interviews with participants in the NCI-funded Breast Cancer Family Registry (BCFR). Our goal was to gain a better understanding of attitudes towards different types and amounts of genomic information, current interest in pursuing genomic testing, and perceived risks and benefits. We interviewed 32 women from the six BCFR sites in the USA, Canada, and Australia. In this sample of women with a personal or family history of breast cancer, we found high acknowledgement of the potential of genetics/genomics to improve their own health and that of their family members through lifestyle changes or alterations in their medical management. Respondents were more familiar with cancer genetics than the genetics of other diseases. Concerns about the testing itself included a potential sense of loss of control over health, feelings of guilt on passing on a mutation to a child, loss of privacy and confidentiality, questions about the test accuracy, and the potential uncertainty of the significance of test results. These data provide important insights into attitudes about the introduction of increasingly complex genetic testing, to inform interventions to prepare individuals for the introduction of this new technology into their clinical care.

Determining Physical and Mental Health Conditions Present in Older Adult Refugees: A Mini-Review.

In 2017, there were over 65 million displaced persons at the global level, with approximately 23 million of these people living as refugees around the world. In this same year, the US resettled 53,716 refugees, with the State of Utah receiving 954 of those refugees. Refugees, in general, often face health-related challenges upon resettlement. Since the health of aging refugee men and women is of growing concern, host communities face significant challenges in accommodating the health needs of a diverse refugee population. This study, a review of physical and mental health data from the Utah Department of Health, was undertaken in an effort to ascertain the prevalence of health conditions among refugee men and women 60 years and older arriving in Utah. Findings include information on diseases correlated with increasing age, such as hypertension, decreases in vision, arthritis, and low back pain, which are common among this population of refugees aged 60 years and older. Overall, most of the health conditions assessed affect women and men with a similar prevalence. Some notable exceptions are a history of torture and violence, and a propensity for tobacco use. When dealing with refugee men older than 60 years, providers should consider the psychological ramifications of having endured such atrocities, as well as introduction to evidence-based tobacco cessation programs. When working with refugee women of the same age, an increase in the prevalence of musculoskeletal pain and urinary tract infections should be considered.

Health and Well-being of Women Migrating from Predominantly Muslim Countries to the United States.

The purpose of this study was to examine the health and well-being of women migrating from predominantly Muslim countries to the U.S. Women from predominantly Muslim countries completed a paper survey on the following topics from June to December in 2016 (N=102): depression; physical functioning; self-reported general health; experiences with health care; and demographic characteristics. There were several women's health-related issues: low rates for mammography and Pap smear screening, and preference for female physicians and/or physicians from the same culture. Only one-third of the participants had received a physical exam in the past year, and having done so was related to higher levels of depression and worse physical functioning. The participants who were not in a refugee camp reported higher levels of depression than those who were.

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

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.

Reproductive Health in the United States: A Review of the Recent Social Work Literature.

Reproductive health is an important area affecting a woman's overall health and well-being. The examination of reproductive health and barriers to care is pertinent to the social work profession and should be a focus of social work practice, education, research, and advocacy. The authors conducted a literature search of articles published in the social work literature from 2010 to 2014. The findings reveal important published articles that increase our knowledge of the reproductive health of women in the United States. Most published articles focused on pregnancy and birth outcomes. Articles also addressed sexually transmitted infections; abortion; intimate partner violence; prostitution; access to care; cancer screening; views toward contraception; hysterectomies; breastfeeding; menopause; and the intersection of reproductive rights, religion, and social justice. This review also identified unexamined areas that require further social work attention and consideration.

Psychosocial Adjustment in School-age Girls With a Family History of Breast Cancer.

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.

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 Utah's 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.

Human subjects protection: an event monitoring committee for research studies of girls from breast cancer families.

PURPOSE: Researchers must monitor the safety of research participants, particularly in studies involving children and adolescents. Yet, there is limited guidance for the development and implementation of oversight committees for psychosocial, behavioral intervention, and observational studies. METHODS: We implemented a model for an Event Monitoring Committee (EMC) in three related studies recruiting 6- to 19-year-old girls from families with and without breast cancer. RESULTS: The EMC model can be valuable for investigators and local institutional review boards when additional oversight is desired. Recommendations are provided and intended to be broadly applicable to a wide range of research activities designed to improve the health of children, adolescents, and families. EMC goals, membership, and procedures for monitoring and assessing risks and benefits should be defined but should also be flexible and tailored to the study design and population. The EMC model also provides an independent comprehensive, study-wide oversight mechanism for multicenter psychosocial, behavioral intervention, and observational studies. CONCLUSIONS: An EMC provides an alternative oversight approach where additional independent assessment and oversight of study-related risks are desired, particularly in the setting of vulnerable populations, children and adolescents, or where risks nontraditional to the medical field (i.e., social, emotional, or cultural) are possible.

A qualitative study evaluating parental attitudes towards the creation of a female youth cohort (LEGACY) in the Breast Cancer Family Registry.

OBJECTIVES: Expanding the existing Breast Cancer Family Registry (BCFR) to enrol daughters aged 6-17 years in a prospective cohort study named LEGACY (Lessons in Epidemiology and Genetics of Adult Cancer from Youth) offers the opportunity to study the effects of genetic and environmental exposures in youth on adult breast cancer risk. Few studies have assessed parents' willingness to enroll their daughters in genetic epidemiological cohort studies. Since BCFR parents are the gatekeepers of their daughters' future enrollment, it is important to explore their interests and attitudes towards LEGACY. METHODS: Semi-structured telephone interviews were conducted with 85 BCFR participant parents at 3 BCFR sites in Ontario, Canada, and in Utah and Northern California. We explored parents' thoughts and feelings (interests and attitudes) regarding their daughters' enrollment in LEGACY and different data collection modalities. Qualitative analysis of audiotaped interviews was carried out utilizing an inductive content analysis. RESULTS: Parents' acceptance of three data collection modalities were 92% (78/85) for questionnaire data, 87% (74/85) for biological samples and 63% (46/73) for physical examination for pubertal staging. The parents' primary motivation for participation was altruistic. Their concerns regarding their daughters' participation centered on exacerbating awkward pubertal feelings, increasing cancer anxiety, respecting autonomy and maturity, privacy and future use of data and logistical impediments. CONCLUSION: Parents demonstrated a high level of interest in the creation of LEGACY. Their motivation to participate was balanced by their desire to protect daughters from undue harm. These interviews contributed valuable information for the design of LEGACY.

Pancreatic cancer surveillance among high-risk populations: knowledge and intent.

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.

Assessing cultural appropriateness of three translated cancer-related fatigue instruments.

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.

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

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 Utah's 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.