Pathways by which health outcomes influence risk factors: In Chap. 4, Fredrikson-Goldsen et al. highlight the need for research that delineates pathways by which health outcomes can be influenced by risk factors that result from a sexual or gender minority status. They recommend studying the interplay of factors such as social exclusion and discrimination, in combination with the presence/absence of personal/social resources that may result in adverse health behaviors, such as smoking, some of which have been linked to the etiology of cancer. Fredrikson-Goldsen et al. also suggest assessing the protective factor of marriage as an influence on health behaviors, only recently granted to the LGBT community in more than two thirds of US states. Although it has been shown that smoking is more prevalent among LGB adolescents and at a younger age, in Chap. 5, Burkhalter stresses the need for studies focusing on the etiology of smoking disparities among sexual and gender minorities. Also unstudied to date are tobacco prevention and cessation interventions specifically targeted to the LGBT community.

In Chap. 6, Clark et al. point out the wide range of studies to determine the prevalence of screening, identify those subgroups less likely to be screened, and study interventions appropriate to those subgroups that would enhance screening. Lacking are population-based studies to determine the barriers to and facilitators of screening. Also missing are studies of subgroups within the LGBT community, including racial and ethnic minorities, and intervention studies to test methods of reducing barriers. Research is also needed on cancer screening recommendations made by providers to LGBT individuals, the outcome on screening adherence of LGBT-sensitivity training programs for healthcare staff, such as the one provided by the National LGBT Cancer Network or the Human Rights Campaign Health Equality Index. In Chap. 7, Blank et al. highlight the need for more research on effective screening, screening intervals, relative benefits and risks of screening, and screening training, especially how to direct appropriate screening messages to gay and bisexual (GB) men, men who have sex with men (MSM), and transgender people.

As documented by Amiel et al. (Chap. 10) and Haigentz (Chap. 11), cancer in sexual minority men is under-researched, including associated psychosocial issues, despite strong epidemiological data of increasing cancer rates among sexual minority men with HIV-infection. Focusing on women with breast cancer in Chap. 9, Boehmer highlights the many gaps that remain in terms of our knowledge of sexual minority women undergoing or who have undergone treatment. There is a need for research on understanding sexual minority women’s experiences with disclosure to their provider and their experience within the health care system. Lacking are studies about sexual minority women’s perceptions of treatments and their outcomes, treatment preferences, decision-making and adherence to treatments. Boehmer points out that it is key that we conduct such studies in order to ensure that sexual minority women achieve their desired role in decision making, are fully informed about treatments and side effects, and are supported in coping with late and long-term effects. Boehmer highlights several other areas of missing research. Little is known on health care providers’ perceptions and attitudes towards sexual minorities, knowledge of and skills in caring for sexual minorities. We know almost nothing about sexual minority women diagnosed with Stage IV cancers, or those with a recurrence or secondary cancers. The experiences of sexual minority women undergoing treatment at these stages, and their unique needs and preferences need to be explored. Survivorship Care Plans are designed to achieve coordinated care with the overall goal of enhancing quality of care for cancer survivors. However, there are no studies that have determined whether survivorship plans for sexual minority women are tailored to address their unique needs. Research is needed to understand the experiences of caregivers to the sexual minority cancer patient. There is a dire need for intervention studies. The economic burden of cancer on sexual minority women’s lives, families, and relationships has been unexplored to date. Studies of subgroups of sexual minority women, including those from an ethnic or racial minority, rural areas, those who are older, and others are missing from the literature and are necessary to provide us with an understanding of the needs and challenges facing each of these unique groups. In their introduction to Chap. 13 on Cancer Survivorship, Margolies and Kamen begin by referring to a review by Boehmer [1], pointing out that despite the large number of LGBT cancer survivors, they have for the most part remained invisible in research. There is limited information on the support-seeking behavior of LGBT cancer survivors. In Chap. 14, Elk highlights the paucity of research that focuses specifically on understanding the needs, preferences, and perspectives of LGBT people at end of life, and how their preferences and those of their partners influence their end of life care decisions. Other than the literature focusing on those with HIV and AIDS, there have only been a handful of studies focusing on the experiences of LGBTs at end of life and a few focusing on their anticipated future. Large-scale research in this area remains a priority, for it is only through this process that we can build the necessary evidence to design evidence-based programs tailored to the unique needs of LGBT patients who are facing a life-limiting illness.

Up to now, the groundbreaking studies discussed throughout this book were predominantly framed from the perspective of health disparities or health inequities, (e.g., lower rates of screening, more cancer risk behaviors), comparing LGBT individuals to heterosexual individuals. This remains a compelling approach, which needs to be continued to fully explore all aspects of cancer for LGBT individuals and to reveal all aspects of structural discrimination and deprivation that hinder LGBT people from living long healthy lives. Researchers also frequently assess the unique aspects of LGBTs that are not mirrored by heterosexuals (e.g., disclosure of sexual identity, experiences stemming from living as a minority).

Many of the frameworks that guide other health research or the research of other health issues that affect LGBT patients need to be applied to cancer more fully in the future. Moving forward it is important to make use of these additional frameworks to deepen the understanding of the LGBT communities in the context of cancer. Consistent with the recommendations of the IOM report [2], the life-course framework can be applied to an understanding of cancer, prevention, and cancer risk factors, acknowledging that events at each stage of life influence subsequent stages and recognizing that experiences are shaped by one’s age cohort and historical context. Similarly, the minority stress model, which posits that sexual and gender minorities experience chronic stress as a result of their stigmatization [2] will need be fully explored in the context of cancer, including studies that examine the neurophysiological responses to the stress experienced by LGBT people, including studies that explore biomedical pathways of minority stress on immune function. Another framework, syndemic theory, which has been used for understanding HIV risk in the LGBT population, is likely suitable and beneficial for understanding LGBT patients and cancer as well. Syndemic theory refers to the understanding that two or more conditions are interconnected and interacting synergistically, thereby contributing to an excess burden of disease in the LGBT population, as has been shown for the HIV epidemic in the US [3]. Yet another approach, the Health Equity Model [4], is described in detail by Fredriksen-Goldsen et al. (Chap. 4). These authors explain that the health equity approach aims not only to reduce disparities but also to fully maximize efforts embedded within social contexts so that all people can attain their full health potential. Other models for deepening the understanding of LGBT health in the context of cancer are the resilience of LGBT individuals and the LGBT community. Resilience has also been utilized as a framework for understanding prevention of HIV among gay and bisexual men [5]. These frameworks are not intended as an exhaustive list of approaching LGBT populations and cancer, but as examples of approaches to apply in future cancer-related studies.

Although there are many studies indicating the need for culturally sensitive, tailored interventions to reduce behavioral risk among LGBT people, see Fredriksen-Goldsen et al. (Chap. 4), the reality is that there is a dearth of programs designed to address specific behavioral risks in modifying cancer-related risk behaviors. For example, of the 14,000 substance abuse treatment centers in the US, Fredriksen-Goldsen et al. explain that only 6 % of these target lesbian or gay clients. In Chap. 3, Tracy provides another example: the lack of an evidence-base for health promotion materials developed for sexual minority women on safe sex practices. In Chap. 5, Burkhalter discusses data that indicate a high prevalence of smoking among LGB youth and LGBT adults, higher than their heterosexual counterparts, pointing to a strong need to find effective culturally-tailored programs. Thanks to the effort of the Network for Health Equity (now called LGBT HealthLink) headed by Dr. Scout, there has been progress in the field of smoking, such as advising the CDC on data inclusion in the 2012 National Adult Tobacco Survey, which led to the first national LGBT smoking prevalence data. Also, the CDC’s Office of Smoking and Health now has several LGBT tailored ads in their mass media campaigns. There remains much work to be done, however; few state-level tobacco control campaigns include LGBT tailored activities, and most tobacco quit line staff are not trained in LGBT cultural competency. In Chap. 17, Scout describes how the Affordable Care Act (described below) created a new wave of cancer prevention activities nationwide, with half a billion dollars flowing into community grants that created local level programs focused on several cancer risk reduction strategies. However, despite top-level LGBT inclusion in the Task Force on Prevention, the actual ­funding ­announcements for these mechanisms did not result in prioritization for LGBT inclusion. Despite the prioritization of inclusion of LGBT people in federal documents, other funding sources that were earmarked for city and state cancer prevention efforts resulted in only a few tailored LGBT cancer prevention programs.