Sexual and Gender Plurality: Considerations for a Diverse and Inclusive Approach to Quality Care for Adolescents and Young Adults with Cancer

Background and Purpose: Addressing risks and remedies for treatment-induced infertility is a critical aspect of care for adolescents and young adults (AYA) with cancer. Additional reproductive health concerns such as sexual and gender identity development, sexual health and functioning, and relationship issues are also important to AYAs, and in some situations, may be of more interest than infertility risk. A clinical emphasis on the medical and physiological aspects of infertility and fertility preservation for this at-risk population privileges a heteronormative approach to reproductive health at the exclusion of sexual and gender minorities (SGM). Lack of attention to sexual and gender plurality within the field of cancer care for AYAs has been flagged as a limitation. Research is needed to identify and enhance supportive pathways to inclusive care for marginalized AYAs.

Methods: This paper presents the results of a targeted literature review and content analysis. To contextualize psychosocial aspects of AYA reproductive medicine and oncology (i.e. oncofertility) between 2009-2019, peer-reviewed journal articles were identified using a targeted search of keywords associating AYA cancer, oncofertility, and psychosocial concerns (388 articles). Search results were ordered chronologically, and abstracts were reviewed and selected for broad relevance to psychosocial issues (262 articles). Results were subsequently reviewed for their relevance to oncofertility service delivery (46 articles). Findings were then cross-referenced against content analysis of American Society of Clinical Oncology (ASCO) Fertility Preservation Guidelines. Content analysis was used to track emergence of attention to SGM psychosocial issues (or lack thereof) in each progressive publication of the ASCO guidelines (2006, 2013, 2018).

Results: Literature indicates variability in providers’ knowledge, attitudes, and beliefs about oncofertility leads to inconsistencies in referral to and use of services. Provider bias regarding patient characteristics - such as age, sex, race, and sociodemographic status - impact if and how providers deliver oncofertility services. Less is known about the particular obstacles that SGM patients face in accessing equitable and appropriate oncofertility services. However, empirical evidence suggests that being lesbian, gay, bisexual, transgender, non-binary, queer, cisgender female, and/or HIV-positive are all associated with lower rates of oncofertility referral. Because LGBTQ+ patients in general have historically low rates of health care use and report notoriously negative health care experiences, the authors deduce that SGM patients encounter provider bias and structural barriers to accessing appropriate oncofertility services. Nevertheless, content analysis reveals that ASCO guidelines make no targeted recommendations for oncofertility service delivery for SGM. Lack of attention to inclusive reproductive health needs in the ASCO guidelines therefore reinforces biases that privilege heterosexual reproduction.

Conclusions and Implications: By identifying the salience of heteronormative reproduction in the psychooncology literature and the ASCO guidelines, this presentation articulates a need for a more inclusive approach for clinical assessment and referral to oncofertility services. This must be reflected in future versions of practice guidelines for AYAs with cancer. Social work researchers are particularly poised to discover and integrate issues of biopsychosocial diversity and inclusivity into oncofertility service referral and delivery because of the profession’s explicit attention to vulnerable populations and social justice orientation.