Faculty Bibliography

Cancer innovations, such as biobanking technologies, are continuously evolving to improve our understanding and knowledge about cancer prevention and treatment modalities. However, the public receives little communication about biobanking and is often unaware about this innovation until asked to donate biospecimens. It is the researchers' ethical duty to provide clear communications about biobanking and biospecimen research. Such information allows the public to understand biobanking processes and facilitates informed decision making about biospecimen donation. The aims of this paper are 1) to examine the importance of clear communication as an ethical imperative when conveying information about cancer innovations and 2) to illustrate the use of an organizing framework, the CLEAN ( C ulture, L iteracy, E ducation, A ssessment, and N etworking) Look approach for creating educational priming materials about the topic of biobanking.

PURPOSE: National guidelines recommend patients with cancer of reproductive age be informed of their risk for infertility resulting from cancer treatment. Despite existing technologies to preserve fertility, many patients report not receiving timely information about fertility risk, and oncology providers report multiple barriers to discussing or referring patients on this topic. METHODS: Nine cancer centers have been recognized as Fertile Hope Centers of Excellence, a designation awarded to cancer centers with an institutionalized approach to addressing fertility issues. Individual semistructured interviews were conducted with each of these centers to identify strengths of and challenges to their approaches. RESULTS: All institutions had procedures for the provision of topical professional and patient education and for notification of patients. Notification methods varied widely, from use of customized consent forms to highly automated electronic alerts for providers. Referral routines and enactment of institutional policies also differed. Key components of successful programs emerged, including the value of internal champions, affiliation with complementary programs, and resource sharing. CONCLUSION: The programs described provide examples of systems that can be assembled in different types of clinical settings, depending on the availability of resources and infrastructure. As institutions develop programs, metrics to evaluate notification systems, in particular, as well as the supportive program components, should be used so identification of best practices can continue. Widespread adoption of programs that incorporate the baseline elements identified will not only comply with national guidelines but also address patients' reproductive needs and fundamentally affect future quality of life.

Posthumous reproduction is an issue fraught with legal, ethical, religious, and moral debate. The involvement of the hospice and palliative care community in this debate may be peripheral due to the fact that other health care professionals would be actually delivering the services. However, the hospice and palliative care community are more likely to treat patients considering posthumous reproduction as they near the end of their lives. This article provides the hospice and palliative care community with a review of the medical, ethical, and legal considerations associated with posthumous reproduction. Having knowledge of these issues, and a list of available resources, will be useful if hospice and palliative care staff find themselves facing a patient or family that is considering posthumous reproduction.

This report describes the steps taken to develop an evidence-based series of current smoking relapse-prevention booklets for Hispanic smokers.

Hispanic women are more likely than non-Hispanic women to quit smoking during pregnancy, indicating that relapse-prevention interventions may benefit this population. We conducted qualitative interviews with health care providers in Puerto Rico who serve pregnant women regarding the cultural acceptability of Libres Para Siempre Por Mi Bebe y Por Mi (transcreated from the English version, Forever Free for Baby and Me), a smoking relapse-prevention booklet series. Providers praised the overall quality of the content, interactive activities, vignettes, and partner booklet. Recommendations included condensing the content, and distributing the booklets during one-on-one counseling and via "charlas"(community themed presentations). Overall, these smoking relapse-prevention materials are culturally acceptable among health care providers, yet there is a need to attend to local cultural preferences for delivering the intervention.

Practice variation in transplant physician management of immune suppression (IS) after allogeneic hematopoietic cell transplantation (HCT) is anticipated to have important consequences, but has not been characterized to date. We conducted a national survey of transplant physician members of the American Society for Blood and Marrow Transplantation to discern variation in IS management, characterize the burden of graft-versus-host disease (GVHD) emerging in the setting of IS taper, and describe the proportion of HCT recipients who successfully discontinue IS by 2 and 5 years post-HCT. There was marked heterogeneity in IS discontinuation practice, with variation in initiation of taper, sequence of agents tapered, frequency of changes, and strategy utilized. Twenty-five percent reported no consistent strategy in their usual practice. Confidence in therapeutic decision making was limited. The majority indicated that they could not predict who would develop GVHD on taper of IS, and reported a resultant burden of both acute and chronic GVHD (aGVHD, cGVHD) emerging or recurring in the setting of IS taper. HCT physicians projected rates of IS discontinuation that increased from 2 to 5 years post-HCT, and differed significantly according to donor relation and stem cell source utilized. The marked variation in practice, burden of GVHD emerging in the setting of IS taper, and limited confidence in therapeutic decision making all highlight shortcomings in an essential component of HCT physicians' scope of practice. These data argue for more rigorous study of IS management post-HCT so that evidence-based practice guidelines can be developed.

BACKGROUND: Little is known about the preferences of at-risk Hispanic women to gain information on hereditary breast and ovarian cancer (HBOC). AIMS: This study sought to qualitatively explore preferences for HBOC information among at-risk Mexican, Puerto Rican and Cuban women and to pilot a mock brochure aimed at Hispanic women. METHODS: Hispanic women aged 18-65 years with a personal or family history of breast or ovarian cancer participated in a semistructured interview. Data were analyzed using a combination of open-coding and content analysis. RESULTS: Fifty-three women participated in the study. For the majority of content areas, there were no major differences between the subethnicities. All women reported discussing cancer with a doctor after a family member had been diagnosed and discussing cancer within their families; however, the content of the discussion varied. Cuban and Puerto Rican women reported using the Internet routinely for health care information while Mexican women said they did not have access to computers and did not use them. All women liked the content and photos in the brochure but Mexican women thought the reading level was too high. Preferences for the spokesperson focused on the need for Spanish-speaking health care providers. CONCLUSIONS: While the data show some similarities, such as patterns of cancer discussion and appreciation of the mock brochure, there were differences between the groups on information preferences. In designing HBOC education information for Hispanic audiences, it is important to consider varied channels for dissemination and preferences for specific types of information across subethnicities.