Breitkopf, Carmen Radecki

AbstractObjectiveThe objectives were to assess the feasibility of using a novel, comprehensive chaplain‐led spiritual life review interview to develop a personal Spiritual Legacy Document (SLD) for persons with brain tumors and other neurodegenerative diseases and to describe spiritual well‐being (SWB), spiritual coping, and quality of life (QOL) of patients and their support persons (SP) before and after receipt of the SLD.MethodsPatient‐SP pairs were enrolled over a 2‐year period. Assessments included the Functional Assessment of Chronic Illness Therapy‐Spiritual Expanded Version, Brief Religious Coping Scale, Brief COPE Inventory, and QOL Linear Analog Scale. Baseline assessments were completed prior to an audio‐recorded spiritual life review interview with a chaplain.ResultsThirty‐two patient/SP pairs were enrolled; 27 completed baseline assessments and the interview. Twenty‐four reviewed their SLD and were eligible for follow‐up. A total of 15 patients and 12 SPs completed the 1‐month follow‐up; 10 patients and seven SPs completed the 3‐month follow‐up. Patients endorsed high levels of SWB and spiritual coping at baseline. Both patients and SPs evidenced improvement on several aspects of SWB, spiritual coping, and QOL at 1 month, but patients' decreased financial well‐being was also observed. Patients and SPs demonstrated favorable changes in peacefulness and positive religious coping at both time points.ConclusionsA chaplain‐led spiritual life review is a feasible intervention for patients with neurodegenerative disease and results in beneficial effects on patients and SPs. Copyright © 2015 John Wiley & Sons, Ltd.

Altruism is a well-established reason underlying research participation. Less is known about altruism in adolescent-parent decision-making about clinical trials enrolling healthy adolescents. This qualitative investigation focused on identifying spontaneous statements of altruism within adolescent-parent (dyadic) discussions of participation in a hypothetical phase I clinical trial related to adolescent sexual health. Content analysis revealed several response patterns to each other’s altruistic reasoning. Across 70 adolescent-parent dyads in which adolescents were 14 to 17 years of age and 91% of their parents were mothers, a majority (61%) of dyadic discussions included a statement reflecting altruism. Parents responded to adolescents’ statements of altruism more frequently than adolescents responded to parents’ statements. Responses included: expresses concern, reiterates altruistic reasoning, agrees with altruistic reasoning, and adds to/expands altruistic reasoning. Since an altruistic perspective was often balanced with concerns about risk or study procedures, researchers cannot assume that altruism will directly lead to study participation. Optimizing the informed consent process for early phase clinical trials involving healthy adolescents may include supporting parents to have conversations with their adolescents which will enhance their capacity to consider all aspects of trial participation.

Abstract Background: Racial disparities in breast cancer (BC) outcomes are well-documented. As guidelines for BC screening change, it is particularly important that women have accurate knowledge of risk factors in order to meaningfully participate in screening decisions. We examined knowledge of risk factors for BC among a nationally representative sample of women for whom mammography screening is routinely recommended. Method: Non-Hispanic black (B), non-Hispanic white (W), Hispanic (H), and women of other/multiple races (O) were surveyed using a probability-based web panel weighted to match the known U.S. population of females aged 40-74 years. A total of 17 items were presented in English or Spanish; response options included: “does not put you at increased risk,” “puts you at a small increased risk,” and “puts you at a large increased risk.” For scoring, the latter two categories were combined to reflect “increased risk.” Items included 9 established risk factors: having mammographically dense breasts, first-degree relative diagnosed with BC, second-degree relative diagnosed with BC, drinking alcohol in excess, history of a breast biopsy, having a first child after age 30, use of hormone therapy for postmenopausal symptoms, BRCA gene mutation, late onset of menopause; 5 protective factors: menarche after age 15, having children, breastfeeding, having a diet rich in fruits and vegetables, exercising or being active; one factor with no clear association: being a smoker (correct response was no increased risk); and 2 distractors (beliefs for which there is no evidence, correct response was no increased risk): using antiperspirant/talc under your arms, experiencing injury/trauma to the breast. The survey cooperation rate was 65% (1,506 responders out of 2,311). Items were scored correct if the respondent's answer matched the actual risk profile (either does/does not put you at increased risk). Percent correct was calculated for each item overall and by race/ethnicity. All reported percentages and analyses are weighted to be nationally representative and compared for differences based on race/ethnicity using logistic regression models. P-values represent differences in percent correct between the racial/ethnic groups. Results: Knowledge of risk factors varied across items (range >90% to 20% correct). Percent correct was high overall for classifying a first-degree relative with BC as a risk factor and differed by race/ethnicity, with 86% B, 98% W, 92% H and 92% O recognizing this risk factor (p<0.001); similar percentages were observed for second-degree relatives (p=0.003). Lower knowledge overall was observed for risk factors including BRCA mutation (25% B, 44% W, 24% H, 38% O, p=0.002), later onset of menopause (41% B, 38% W, 42% H, 37% O, p=0.92), and having the first child after age 30 (39% B, 41% W, 38% H, 33% O, p=0.53). Having mammographically dense breasts is one of the strongest risk factors for BC, however knowledge of this was only moderate and did not differ by race/ethnicity (61% B, 54% W, 56% H, 52% O, p=0.64). Relative to risk factors, knowledge of protective factors was generally higher; only correct classification of fruits/vegetables as a protective factor differed by race/ethnicity (84% B, 93% W, 88% H, 89% O, p=0.03). Most women correctly responded that use of antiperspirant/talc does not increase risk of BC, however 60% of H women incorrectly classified injury/trauma to the breast as a risk factor, relative to 50% B, 41% W, and 40% O (p=0.02). Conclusions: Among U.S. women, there is wide variation in knowledge across several established BC risk factors and only moderate knowledge of breast density as an important risk factor. Differences in knowledge by race/ethnicity for several risk factors highlight the need for targeted education. Citation Format: Carmen Radecki Breitkopf, Deborah J. Rhodes, Sarah M. Jenkins, Jeanette Y. Ziegenfuss, Celine M. Vachon. Racial and ethnic differences in knowledge of risk factors for breast cancer: Findings from a recent national survey. [abstract]. In: Proceedings of the Sixth AACR Conference: The Science of Cancer Health Disparities; Dec 6–9, 2013; Atlanta, GA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2014;23(11 Suppl):Abstract nr B42. doi:10.1158/1538-7755.DISP13-B42

Purpose Legislation mandating disclosure of breast density (BD) information has passed in 21 states; however, actual awareness of BD and knowledge of its impact on breast cancer detection and risk are unknown. Methods We conducted a national cross-sectional survey administered in English and Spanish using a probability-based sample of screening-age women, with oversampling of Connecticut, the only state with BD legislation in effect for > 1 year before the survey. Results Of 2,311 women surveyed, 65% responded. Overall, 58% of women had heard of BD, 49% knew that BD affects breast cancer detection, and 53% knew that BD affects cancer risk. After multivariable adjustment, increased BD awareness was associated with white non-Hispanic race/ethnicity (Hispanic v white non-Hispanic: odds ratio [OR], 0.23; P < .001), household income (OR, 1.07 per category increase; P < .001), education (OR, 1.19 per category increase; P < .001), diagnostic evaluation after a mammogram (OR, 2.64; P < .001), and postmenopausal hormone therapy (OR, 1.69; P = .002). Knowledge of the masking effect of BD was associated with higher household income (OR, 1.10; P < .001), education (OR, 1.22; P = .01), prior breast biopsy (OR, 2.16; P < .001), and residing in Connecticut (Connecticut v other states: OR, 3.82; P = .003). Connecticut residents were also more likely to have discussed their BD with a health care provider (67% v 43% for residents of other US states; P = .001). Conclusion Disparities in BD awareness and knowledge exist by race/ethnicity, education, and income. BD legislation seems to be effective in increasing knowledge of BD impact on breast cancer detection. These findings support continued and targeted efforts to improve BD awareness and knowledge among women eligible for screening mammography.

Objective: To examine perceptions and attitudes toward health-related research participation among professional African American women. Methods: Participants were members of an African American women's service organization, The Links, Incorporated. Data were collected via self-administered questionnaires at The Links, Incorporated 2012 National Assembly. Sociodemographics, prior research experience, intention to participate (ITP), willingness to participate (WTP) in a variety of research studies and attitudes about research participation were measured. Results: A total of 381 surveys were analyzed. A majority of respondents were married (66%), employed (69%), and college educated (96%). Median age was 59; 38% reported prior research participation. Overall, 78% agreed with the statement, “Participation in research will mean better care,” 24% agreed “Participation in research is risky” and 3% agreed “Scientists cannot be trusted.” Fifty-two percent agreed with the statement, “Research conducted in the U.S. is ethical.” Mean ITP in research was 4.9±1.7 on a rating scale of 1 (“definitely no”) to 7 (“definitely yes”). WTP was highest for an interview study and providing a blood sample, and lowest for clinical trial and medical record review. Conclusion: Attitudes toward research participation were generally favorable among professional African American women; many expressed WTP in a variety of research study types.

This study assessed the patterns of nonhospice health care utilization among 207 deceased cancer patients and focused on outcomes after cancer treatment was stopped. A total of 117 (57%) were enrolled in hospice. The mean cumulative number of emergency department visits, hospitalizations, or other noncancer clinic visits (standard deviation) among those enrolled and not enrolled in hospice was 1.8 (± 1.8) and 3.11 (± 3.0), respectively ( P < .0001). Among hospice enrollees, the mean cumulative visits (standard deviation) was 1.29 (± 1.7) and 0.5 (± 1.0) before and after enrollment, respectively ( P < .0001). For patients who eventually enrolled, the rates of nonhospice health care visits (visits per week) yielded a trend to suggest a decline ( P = .054). Hospice was associated with a drop in nonhospice-related health care utilization, thus suggesting it provides timely medical interventions and favorable continuity of care.

Purpose. Vietnamese women are at particular risk of osteoporosis and its complications. This study examined osteoporosis knowledge and awareness among Vietnamese women who have accessed health care. Methods. A sample of 217 women, 13 to 76 years of age, who were attending 1 of 2 health care facilities in Da Nang, Vietnam, between November and December 2009 completed a questionnaire assessing their awareness of osteoporosis and measuring their knowledge using a 30-item instrument reflecting 9 knowledge domains (eg, risk factors, diagnosis, prognosis). Results. A majority (81.6%) of the women had heard of osteoporosis. Awareness was associated with education, working in health care, and having a family member with osteoporosis. On average, Vietnamese women answered 49% of the knowledge questions correctly; scores ranged from 0 to 26 questions correct out of 30 (mean = 14.71 ± 5.2, median = 15). Mean knowledge scores were higher among those reporting a family member with osteoporosis, nurses (vs other vocations), and women with a high school education or greater (relative to those who had not completed high school). More than 90% of the women expressed interest in a prevention and treatment program. Conclusions. Vietnamese women may have heard of osteoporosis, yet they would benefit from education targeting prevention and treatment of the disease.

A greater understanding of participant views regarding reimbursement will help investigators plan studies that have better potential for reaching target enrollment, maximize efficient recruitment, maintain scientific integrity, and enhance retention over time. As part of a clinical trial in the area of sexual health, healthy women's perceptions of reimbursement for research participation were investigated. Semi-structured, audio-recorded, qualitative interviews were conducted immediately upon women's completion of the clinical trial to enable a participant-driven understanding of perceptions about monetary reimbursement. Audio-recordings were transcribed and analyzed using framework analysis. Women (N = 30) had a mean age of 29.5 ± 5.7 years (range 22–45 years). Sixty-three percent of participants (n = 19) were non-Hispanic (white n = 13, black n = 4, and Asian n = 2), while the remaining were Hispanic (n = 11). Seventy-three percent (n = 22) reported previous participation in research. In general, women viewed reimbursement as a benefit to research participation, the amount of which should reflect time, the inconvenience to the research subject, and the potential for unknown risks in the short- and long-term. They believed reimbursement should take into account the degree of risk of the study, with investigations of experimental products offering greater reimbursement. Women believed that monetary reimbursement is unlikely to coerce an individual to volunteer for a study involving procedures or requirements that they found unacceptable. The results of this study can be used to provide guidance to those planning and evaluating reimbursement for research participation.