Faculty Bibliography

BACKGROUND: Young breast cancer survivors often need to deal with adverse effects of treatments on fertility and complex reproductive decisions. In this systematic review, we highlight what is known about childbearing and parenthood attitudes and decisions of young breast cancer survivors from their own perspective. METHODS: We conducted manual and electronic searches on Pubmed, PsychInf and CINAHL databases for articles, published in English between 1 January 1990 and 31 October 2012, that assessed childbearing, pregnancy and parenthood attitudes/decisions of female breast cancer survivors (premenopausal and/or <50 years old). Eligible articles were classified into quantitative studies, qualitative studies and mixed methods studies. Data from each study were individually extracted by all the authors, and standardized tables were created and discussed to ensure congruence of the information extracted. RESULTS: Of the 493 publications identified in PubMed (results are presented for PubMed searches as the other databases did not yield any new relevant papers), 8 met the inclusion criteria, in addition to 2 publications retrieved manually. A total of 10 studies provided information on pregnancy and parenthood attitudes and decisions, in addition to risks and benefits of childbearing after breast cancer. Survivors had mixed attitudes towards the issue. Fear associated with future pregnancy was reported, namely the risk of cancer recurrence. However, for many survivors, pregnancy and parenthood can represent normalcy, happiness and life fulfilment. CONCLUSIONS: Childbearing after breast cancer is an important issue for survivors. Future larger and prospective studies should be implemented to increase certainty of conclusions of current research. Clinicians may benefit from a deeper understanding of the importance of pregnancy and parenthood to survivors in order to provide the needed educational and psychosocial support services, overcome misinformation and better assist women with their fertility-related decisions.

Although screening reduces colorectal cancer (CRC) incidence and mortality, screening rates are low, particularly among CRC patients' first-degree relatives (FDRs). Little is known about discussion of family members' risk of CRC among patients and their health care providers or with their FDRs. The purpose of this research, guided by the Protection Motivation Theory, was to assess patients' patterns of disclosure of CRC diagnosis to adult siblings and/or children and discussion of familial risk by healthcare providers. A cross-sectional sample of patients who received care at a comprehensive cancer center was recruited to complete telephone-based interviews related to disclosure of CRC diagnosis to FDRs, recall of physician counseling about familial risk, and patients' perception of CRC risk to FDRs. Sixty-nine patients completed the interview. Most participants (n = 67, 97%) had informed their adult children or siblings of their CRC diagnosis to keep their family informed of their health status (n = 15, 22%) and to encourage FDRs to screen for CRC (n = 14, 20%). More than half of the participants' physicians (n = 38, 55%) discussed FDRs' risk of developing CRC with the patient. However, a substantial proportion of patients reported no physician discussion of this risk (n = 28, 41%). Data from this study may guide the development of interventions to facilitate physician discussion and counseling of CRC patients about their FDRs' risk for CRC. However, future studies should explore whether FDRs are likely to be screened after becoming aware of their family member's diagnosis of CRC.

BACKGROUND: No validated multiscale instruments exist that measure community members' views on biobanking and biospecimen donation. This study describes the development and psychometric properties of the English-language BANKS (Biobanking Attitudes and Knowledge Survey). METHODS: The BANKS was created by item generation through review of scientific literature, focus groups with community members, and input from a community advisory board. Items were refined through cognitive interviews. Content validity was assessed through an expert panel review. Psychometric properties of the BANKS were assessed in a sample of 85 community members. RESULTS: The final BANKS includes three scales: attitudes, knowledge, and self-efficacy; as well as three single items, which evaluated receptivity and intention to donate a biospecimen for research. Cronbach alpha coefficients for two scales that use Likert response format indicated high internal consistency (attitudes: alpha, 0.88; self-efficacy: alpha, 0.95). Content validity indices were moderate, ranging from 0.69 to 0.89. Intention to donate blood and intention to donate urine were positively correlated with attitudes, knowledge, self-efficacy, and receptivity to learning more about biobanking (P values range from 0.029 to <0.001). CONCLUSIONS: The final BANKS shows evidence of satisfactory reliability and validity, is easy to administer, and is a promising tool to inform biospecimen research. Additional studies should be conducted with larger samples considering biospecimen donation to further assess the reliability and validity of the instrument. IMPACT: A valid and reliable instrument measuring community members' views about biobanking may help researchers evaluate relevant communication interventions to enhance understanding, intention, and actual biospecimen donation. A Spanish-language BANKS is under development.

INTRODUCTION: Reduction of smoking during pregnancy and in the postpartum period remains a public health priority. This study tested whether variables (demographic, pregnancy related, emotional, and smoking related) assessed in abstinent women during their pregnancy predicted resumed smoking at 1 month and 1 year postpartum. Additionally, pregnancy-related and smoking-related variables obtained in the immediate postpartum period were examined as predictors of smoking at 1 year postpartum. METHODS: Participants were pregnant women in their second and third trimester (N = 504) who enrolled in a randomized controlled trial of a smoking relapse-prevention intervention. Multivariate regression analyses were conducted with baseline data collected during pregnancy and follow-up assessments completed at 1 month and 12 months postpartum. RESULTS: Independent predictors of smoking at 1 month postpartum included not intending to remain abstinent, lower quitting confidence, the presence of other household smokers, and not planning to breast feed. Smoking at 12 months postpartum was predicted by only not intending to remain abstinent and having a partner who maintained his or her smoking rate. In contrast, when assessed at 1 month postpartum, smoking at 12 months was predicted by current smoking status and lower quitting confidence. CONCLUSIONS: Baseline variables measured during pregnancy differentially predicted early versus late smoking status. After delivery, the best predictor of later smoking status was current smoking status, reinforcing the need to focus on preventing early postpartum relapse. The importance of quitting confidence, or self-efficacy, was also reinforced. Findings may be useful for screening women at risk of relapse and targeting interventions to key variables.

STUDY OBJECTIVE: Education materials detailing fertility preservation options geared towards pediatric oncology patients are inadequately available, particularly materials that are culturally tailored. An English language pediatric fertility preservation brochure was developed in 2011, and given the significance of family building among Hispanics, it is important to transcreate materials for these audiences using learner verification to explore the unique preferences of the population. DESIGN: Qualitative face-to-face interviews and focus groups. PARTICIPANTS: Spanish-speaking patients (n = 10), parents (n = 10), and healthcare providers (n = 5). Suggestions for revisions were tested with focus groups of the same population (N = 16). MAIN OUTCOME MEASURES: Design, readability, likelihood to read, and overall opinion. RESULTS: Feedback was organized into 2 distinct themes: design and reader action. Overall the majority of parents and patients wanted personal accounts of other patients who had undergone fertility preservation, as well as photos of actual patients. The medical terminology in the brochure was acceptable and understood by most. The majority of participants who preferred the design with vivid colors and patterns explained this was because that brochure also contained more relevant information; however, both brochures had identical information. Many participants explained they would be receptive to receiving the brochure and the reproductive health information should be reinforced throughout cancer care. CONCLUSIONS: A learner verification approach to create pediatric educational materials can judiciously identify unique preferences for information. These results will be utilized to educate Spanish-speaking pediatric oncology patients and their parents to improve decision-making processes regarding future parenthood.

While ethical concerns about participating in biospecimen research have been previously identified, few studies have reported the concerns among individuals with familial risk for hereditary cancer (IFRs). At the same time, biomedical researchers often lack training in discussing such concerns to potential donors. This study explores IFRs' and biomedical researchers' perceptions of ethical concerns about participating in biobanking research. In separate focus groups, IFRs and biomedical researchers participated in 90-min telephone focus groups. Focus group questions centered on knowledge about laws that protect the confidentiality of biospecimen donors, understanding of informed consent and study procedures, and preferences for being recontacted about potential incidental discovery and also study results. A total of 40 IFRs and 32 biomedical researchers participated in the focus groups. Results demonstrated discrepancies between the perceptions of IFRs and researchers. IFRs' concerns centered on health information protection; potential discrimination by insurers and employers; and preferences for being recontacted upon discovery of gene mutations or to communicate study results. Researchers perceived that participants understood laws protecting donors' privacy and (detailed study information outlined in the informed consent process), study outcomes were used to create a training tool kit to increase researchers' understanding of IFRs' concerns about biobanking.

With broadening indications, more options for hematopoietic cell transplantation (HCT) and improvement in survival, the number of long-term HCT survivors is expected to increase steadily. Infertility is a frequent problem that long-term HCT survivors and their partners face and it can negatively impact on the quality of life. The most optimal time to address fertility issues is before the onset of therapy for the underlying disease; however, fertility preservation should also be addressed before HCT in all children and patients of reproductive age, with referral to a reproductive specialist for patients interested in fertility preservation. In vitro fertilization (IVF) and embryo cryopreservation, oocyte cryopreservation and ovarian tissue banking are acceptable methods for fertility preservation in adult women/pubertal females. Sperm banking is the preferred method for adult men/pubertal males. Frequent barriers to fertility preservation in HCT recipients may include the perception of lack of time to preserve fertility given an urgency to move ahead with transplant, lack of patient-physician discussion because of several factors (for example, time constraints, lack of knowledge), inadequate access to reproductive specialists, and costs and lack of insurance coverage for fertility preservation. There is a need to raise awareness in the medical community about fertility preservation in HCT recipients.

BACKGROUND: Little is known about barriers to Hereditary Breast and Ovarian Cancer (HBOC) genetic counseling among Puerto Rican women. OBJECTIVE: This study reviews existing literature to identify individual, interpersonal, and systems level factors that may impact the use of HBOC genetic services among Puerto Rican women living in the United States. METHODS: A systematic search of articles published between the years 1995-2014 was performed in PubMed and ISI Web of Science. Additionally, the bibliography of relevant articles was reviewed for additional potential articles. RESULTS: Individual level barriers most frequently identified included: a lack of knowledge or awareness about HBOC or genetic counseling and testing, and facilitators included high levels of interest in genetic counseling/genetic testing. Interpersonal level barriers included worry about knowing a family member's risk, and conversely, a facilitator was the ability to help family members. Systems level barriers included concerns about the cost, having competing life demands, whereas facilitators included holding private insurance. CONCLUSION: Puerto Rican women are a unique ethnic minority group with specific perceptions, beliefs and levels of education about genetic counseling and testing for HBOC. Addressing individual, interpersonal and systems level factors unique to this group may improve knowledge and awareness. Policy and structural changes may be needed to improve system level barriers.