Faculty Bibliography

Yearly, 33,000 cancer diagnoses in the US are attributed to human papillomavirus (HPV), with cervical cancer the most common. HPV is transmitted through sexual contact; HPV types 16 and 18 cause the majority of ano-genital cancers in men and women. HPV causes approximately 100% of cervical cancers, approximately 90% of anal cancers, and approximately 50% of vaginal, vulvar, and penile cancers. HPV is also involved in approximately 70% of oropharyngeal cancers (OPCs) in the US. The CDC recommends routine administration to all female (bivalent or quadrivalent vaccine) and male (quadrivalent vaccine) patients at 11-12 years of age; the series may be started as early as 9 years of age. Recent evidence suggests physicians do not universally recommend the vaccine to all adolescents. Additionally, parents may refuse the vaccine due to safety concerns as well as religious and moral beliefs related to onset of sexual debut. It has been suggested physicians should consider discussing HPV vaccine as a cancer prevention tool only, with less focus on the fact that transmission is caused by sexual activity. In this commentary we suggest physicians have a duty to warn parents and adolescents that OPCs may be transmitted through oral sex, which is often perceived as not constituting sexual activity.

We describe the development of a psychoeducational intervention (PEI) to increase uptake of genetic counseling targeted to high-risk breast cancer survivors. Based on previous research, scientific literature, and a review of cancer education websites, we identified potential PEI content. We then assessed the initial acceptability and preference of two booklets of identical content but different layouts, by presenting the booklets to individuals with a personal or family history of breast cancer (n = 57). The preferred booklet was evaluated by two focus groups of ten breast cancer patients who had not attended genetic counseling. The booklet was refined based on participants' feedback at each stage. Focus group participants generally found the booklet visually appealing, informative, and helpful, but some thought that it was too long. Final changes were made based on learner verification principles of attraction, comprehension, cultural acceptability, and persuasion. This project produced an interventional tool to present key constructs that may facilitate decision making about risk-appropriate genetic counseling uptake among high-risk breast cancer survivors. The process described for creating, testing, and adapting materials from a patient perspective can be used for developing other PEIs. This newly developed, unique PEI can be used in many clinical settings.

In preparation for the development of a rapid tissue donation (RTD) programme, we surveyed healthcare providers (HCPs) in our institution about knowledge and attitudes related to RTD with lung cancer patients. A 31-item web based survey was developed collecting data on demographics, knowledge and attitudes about RTD. The survey contained three items measuring participants' knowledge about RTD, five items assessing attitudes towards RTD recruitment and six items assessing HCPs' level of agreement with factors influencing decisions to discuss RTD. Response options were presented on a 5-point Likert scale. Ninety-one HCPs participated in the study. 66% indicated they had never heard of RTD prior to the survey, 78% rated knowledge of RTD as none or limited and 95.6% reported not having ethical or religious concerns about discussing RTD with patients. The majority were either not comfortable (17.8%) or not sure if they felt comfortable discussing RTD with cancer patients (42.2%). 56.1% indicated their knowledge of RTD would play an integral role in their decision to discuss RTD with patients. 71.4% reported concerns with RTD discussion and the emotional state of the patient. Physicians and nurses play an important role in initiating conversations about recruitment and donation to research that can ultimately influence uptake. Increasing HCP knowledge about RTD is a necessary step towards building an RTD programme. Our study provides important information about characteristics associated with low levels of knowledge and practice related to RTD where additional education and training may be warranted.

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.

Quality of life (QOL) is increasingly recognized as an important clinical outcome of hematopoietic cell transplantation (HCT), but patient education is often overlooked. The aim of the current qualitative study was to examine education regarding post-HCT QOL from the patient's perspective. Allogeneic HCT recipients participated in one of four focus groups. Participants were asked to recall what they had been told about post-HCT QOL as they were preparing for transplant, how their QOL differed from what they expected and how to educate future patients about post-HCT QOL. Verbatim transcripts were coded for both a priori and emergent themes using content analysis. A total of 24 patients participated (54% female, mean age 51, range 23-73 years). Participants frequently expressed the desire for additional education regarding post-HCT QOL, particularly late complications. They noted that late complications were often unexpected, had a profound impact on their QOL and threatened their ongoing sense of recovery. They emphasized that the timing, content and format of education regarding QOL should be flexible to meet their diverse needs. Findings from the current study draw attention to the importance of patient education regarding post-HCT QOL as well as additional QOL research designed with patient education in mind.