“Queer Insights”: Considerations and Challenges for Assessing Sex, Gender Identity, and Sexual Orientation in Oncofertility Research

Abstract

This article addresses issues related to clinical and research approaches to oncofertility for adolescent and young adult (AYA) sexual and gender minority (SGM) cancer patients. Limited attention has been dedicated to understanding the extent to which oncofertility services are appropriately and equitably delivered to AYAs with diverse orientations toward sexual orientation, gender identity, and future family. Unresolved challenges to conducting research with this vulnerable population perpetuate a lack of adequate knowledge about SGM AYA oncofertility needs. Therefore, the purpose of this paper is to inform considerations of sex, gender identity, and sexual orientation for investigations that include SGM AYAs. In order to improve the knowledge base and clinical services for this population, we discuss (1) challenges to sampling this population; (2) categorization and survey logic (e.g., skip patterns) in light of fluid sexual orientation and gender identities; and (3) clinical implications of accurately assessing sex and gender for oncofertility research and practice. We also recommend strategies for producing inclusive and accurate assessments of sexual and gender identity categories in both research and clinical encounters with SGM AYAs. Incorporating “queer insights” into empirical research – that is, positioning queer theory at the center of oncofertility study design – is suggested as a future direction for oncofertility research and practice.

INTRODUCTION

Adolescent and young adult (AYA) cancer patients are a vulnerable, age-defined population (15–39 years old) whose unique life stage obligates specialized clinical services and research approaches that are distinct from pediatric and adult cancer patients.^1,2 In the United States, there were 633,000 cancer survivors below the age of 39 in 2019, with an estimated additional 89,500 new cancer cases and 9,270 cancer deaths among AYAs in 2020.^3–5 Key developmental milestones in AYAs urge heightened attention to treatment-related infertility risk, sexual health counseling, and fertility preservation (FP) – together known as oncofertility.^6–8 Indeed, approximately 150,000 patients of “reproductive age” are diagnosed with cancer annually in the United States. Amongst those diagnosed, up to 80% are at risk for iatrogenic infertility.^9,10 Cancer-related infertility can be caused by solid tumors affecting reproductive organs, surgeries needed to remove cancerous reproductive organs, certain treatments that affect hormonal levels, and cytotoxic and radiation therapies that damage the reproductive organs.^11,12 Despite clear practice guidelines from the American Society for Clinical Oncology (ASCO) recommending fertility preservation counseling and/or referral prior to cancer therapy for AYAs, referral rates remain low.^13–16

Unaddressed oncofertility challenges, e.g., infertility and sexual dysfunction, are linked to psychological distress,¹⁷ compromised socio-academic functioning,¹⁸ increased risk of self-harm,¹⁹ and decreased overall quality of life.^20–22 Yet, despite the high prevalence and known distress of reproductive health-related sequelae, variability in providers’ knowledge, attitudes, and beliefs about FP persists, leading to inconsistencies in discussions about, referral to, and use of oncofertility services.^10,23–25

As a domain of cancer medicine, oncofertility intersects “oncology” and “reproductive health.”⁸ Reproductive health is a multifactorial term that incorporates several features such as romantic partnering, body image, sexuality, sexual identity and orientation, fertility, contraception, sexually transmitted infections, sexual function, and psychosexual development.²⁶ For transgender and nonbinary (T/N) AYAs, oncofertility includes added attention to hormone replacement therapies, gender-affirming fertility care, and adherence to routine cancer screenings during and after gender-affirming medical transition.²⁷ Oncofertility purports to include a range of reproductive health-related concerns, yet the clinical and research emphases on FP eclipse other sexual health needs at the expense of inclusive reproductive health care,^25,28 especially for sexual and gender minority (SGM) AYAs. Even though oncofertility impacts multiple domains of AYA life, most research on this topic has focused on functional outcomes, rates of clinical trial enrollment, or post-treatment reactions and live birth rates following preservation.²⁹

A most concerning aspect of AYA oncofertility is the disparate attention to SGM AYA patients. Although ASCO has issued FP guidelines in 2006,³⁰ 2013,³¹ and 2018,¹³ none of the iterations acknowledge SGM as a vulnerable population with particular oncofertility needs, nor as facing inequitable access to quality-of-life care. Similarly, since its establishment in 2005, the Oncofertility Consortium³² has reported limited attention, including research efforts, to advance delivery of appropriate and equitable oncofertility services to AYAs with diverse orientations toward sexual and gender identity and future family-making goals.³³ A key contributing factor is the low inclusion rate or identification of a hard-to-reach group (SGM populations) that belongs to an already difficult-to-engage population (AYA cancer patients) both in clinical practice and research.

Existing empirical evidence suggests that being SGM is associated with lower rates of oncofertility referral.³⁴ This is particularly concerning because low referral rates compound the fact that SGM patients have historically low rates of health care use, report notoriously negative health care experiences, and perceive themselves as discriminated against by providers.^35,36 As a result, SGM AYA cancer patients face a multitude of disparities in clinical care, including low satisfaction with patient-centered care and shared decision making;³⁷ enhanced distress caused by oncological providers’ insensitivity or discrimination to their gender identities;³⁸ and the lowest treatment engagement rate when compared to other patient groups, e.g., heterosexual and/or older cancer populations.^38,39 More importantly, disparities in clinical care for SGM AYA cancer patients directly impact the inclusion of SGM AYAs in cancer research, including oncofertility research.

AYA cancer patients have the lowest clinical trial participation rate of all age groups, and such rate among SGM AYA cancer patients is pressumed to be lower than the general AYA population.⁴⁰ AYAs in the general population face barriers to enrolling in clinical trials, including lack of access; eligibility; targeted recruitment; and patient acceptability.⁴¹ SGM AYAs face further barriers to clinical trial and health outcomes research enrollment, including but not limited to: concerns over confidentiality (including discomfort to obtain guardian permission for minors); inaccurate representation in recruitment materials; questionnaire items that fail to acknowledge a full spectrum of gender fluidity; and unintentionally “coming out” to providers and other community members through clinically recruited studies.^8,32 These gaps represent significant health disparities in outcomes and access to appropriate sexual and oncofertility services. To develop affirming, evidence-based clinical services that are inclusive of and appropriate for the needs of this population, research that accurately reflects the SGM population is needed. One major challenge is the inattention or inability to measure and operationalize gender and sexuality in a way that offers accurate and inclusive representation.^43–45 This is especially critical because attending to diverse sexual and gender identities is a growing tenet of best practices for patient-centered care.⁴⁶

Fertility preservation options are based on what gametes the individual produces, and health care providers should take care in using terms to describe genitalia and gametes that will not incite gender dysphoria. For AYA individuals assigned female at birth (AFAB), options include ovarian suppression with gonadotropin-releasing hormone agonist, oocyte cryopreservation, or ovarian tissue cryopreservation. Options for AYA individuals assigned male at birth (AMAB) include semen preservation or testicular tissue cryopreservation (currently considered experimental). For patients receiving radiation, the gonads can be shielded or, in some cases, moved out of the radiation field.⁴⁷

For T/N YAs specifically, studies have assessed utilization of and barriers to fertility preservation prior to gender-affirming hormone therapy. One study of T/N adolescents revealed that almost a third of respondents did not feel they were able to make a meaningful decision about fertility preservation at their age and stage, with the primary barrier to fertility preservation being delayed or disrupted gender-affirming hormones.⁴⁸ Other studies have revealed additional barriers, such as FP cost/insurance status, and anxiety about gender dysphoria increasing during fertility preservation (e.g. transvaginal ultrasounds for oocyte cryopreservation or masturbation for sperm cryopreservation).^49,50 Furthermore, the long-term impact of gender-affirming hormone therapy on gametes is largely unknown, adding another element of uncertainty about the future use of gametes obtained from those already on hormone therapy.⁵¹ T/N individuals have diverse experiences with fertility preservation and therefore emphasize the importance of provider knowledge and comfort in treating SGM equitably.⁵²

The motivation for this paper derives from our experience as a multidisciplinary group of researchers and clinicians working on an FP study for AYA cancer patients (IRB-HUM00157267). As a team, we frequently grapple with best practices for capturing accurate and inclusive representations of sex, gender identity, and sexual orientation. We debate language, categories, and survey logic (e.g., skip-patterns) that represent a broad yet measurable permutation of identities. Yet, as soon as we agree upon a set and sequence of terms, we realize our design excludes one group of patients, may misrepresent another, and in the process threatens the validity, reliability, and subsequent impact of our findings. Our own discursive process and other published method studies^43–45 led us to believe that other oncology researchers and practitioners working with SGM populations are likely confronting similar challenges.

Therefore, this paper aims to inform considerations of sex and gender categories as captured in and produced by investigative studies involving SGM AYAs. We suggest issues to consider for research regarding sex, gender identity, and sexual orientation geared toward improving sexual health and oncofertility services. First, we discuss (1) challenges to sampling this population and producing representative statistical metrics. Next, we raise issues of (2) categorization and survey logic in light of fluid sexual orientation and gender identities. We elaborate upon (3) clinical implications of accurately assessing sex and gender for oncofertility research and practice. To close, we recommend strategies for producing more valid and reliable assessments of gender identity and sexual orientation⁵³ categories in both research and clinical encounters with SGM AYAs.

Sample Size

One of the primary challenges to developing a generalizable knowledge base about SGM AYAs is study sample size. AYA cancer patients are a difficult-to-reach population.^54–56 Recruiting AYAs who identify as SGM is even more challenging for reasons identified earlier, such as concerns of confidentiality and mistrust of researchers.

Structural impediments to sampling minors have resulted in underrepresentation of younger SGM AYA perspectives in sexual health research, despite that fact that most sexual health surveys meet minimal risk criteria.⁴² In many cases, recruitment would not be possible without waivers of guardian consent, as negative parental attitudes toward SGM identities or AYAs not “being out” to their guardians may preclude participation.⁴² Furthermore, Institutional Review Boards’ (IRB) protective stance toward research risks and requirements for guardian consent pose barriers to minor participation in sexual health studies.⁴² Since the 1980s, efforts to amend historical ethical transgressions have led to intense focus on protecting “vulnerable populations” (e.g., minors, SGM).⁵⁷ IRBs refer to “vulnerable populations” as those who have diminished capacity to make decisions in their own interest and/or those who may experience a power differential that could make them susceptible to coercion.⁵⁷ While it is important to ensure that minor SGM participants are not coerced into research, IRBs may impose undue scrutiny by assuming minor AYAs (15–17 years) have diminished capacity to make decisions in their own interest. Heightened measures to protect minors are vital, though they may compromise feasibility as well as lead to protracted IRB review. As such, researchers may default to sampling participants who are over eighteen years, thereby excluding minor AYAs from study samples.

Research efforts inclusive of diverse sex, gender, and sexual orientation may utilize qualitative methodologies to negotiate the sample size challenge. As a result, qualitative studies largely constitute the knowledge base about SGM experiences. Qualitative methodologies are best carried out with small sample sizes to maximize the nuanced, in-depth of understanding of research topics.^58–60 While qualitative studies are highly valuable, a lack of quantitative data about SGM, especially population-level public health data, perpetuates inequity and is a disservice to this population.^61–63 The paucity of cross-sectional population data that accurately reflect realities about sexual and gender identification “invisibilizes”⁶¹ SGM in the scientific knowledge base that drives public health and health service-related policy.⁶⁴ Consequently, identification and resolution of SGM AYA health disparities are lacking to advance the field.

Measurement

The shortage of sexuality and gender identity studies related to oncofertility is due in part to data collection conventions that assume a fixed, binary gender category. Such structure is inherently incongruent with the nature and science of sexual and gender identities, which are fluid and non-mutually exclusive.⁶⁵ Survey research depends upon a system of fixed and mutually exclusive categories to produce a conceptually clear data structure for statistical analysis. Yet sex, gender, and sexuality are plural, fluid, and contingent identities that resist dichotomization or normalization for purposes of observing group differences and statistical significance. To catalog gender and sexuality within a metric system that obligates permutable demographic categories impugns the fundamental essence of “queerness,” which contests rigid or static labels.^66,67 Furthermore, the methods used to solicit sexual orientation and gender identity (SOGI) demographics are not neutral calculations of the patient population but rather hegemonic decisions about which categories exist and are legitimate.⁶⁸ Therefore, in “queering” SGM research approaches, queer theory serves to make visible, critique, and separate the normal (statistically determined central tendency) from the normative (morally determined standard of human gender and sexuality).^61,69 A critical queer theory approach to SGM research must make “queer insights” amenable to empirical analysis.⁶⁷ That is, queer ontologies (ways of being) and epistemologies (ways of knowing) must be viewed as integral to, rather than as an accommodation within, study design.

Technical challenges to carrying out studies oriented from a “queer insights” perspective persist at multiple levels and stages when considering investigative designs and methods. For example, in the data collection phase, investigator-use of survey software that employs skip-patterns to deliver reliable survey logic obligates the investigator to consider the contingency of self-reported SOGI items to prompt the respondent accurately throughout the questionnaire. If the respondent does not see their sexual or gender identity represented in the survey language, they may respond inaccurately, thereby threatening the validity of the findings.⁷⁰

Another example of Measurement challenges arises during data analysis. Statistical inference requires a minimal number of values/data points such that, even when researchers do collect more nuanced SOGI information, within category sample sizes are often too small for valid inference. Consequently, investigators exclude or consolidate sub-groups, resulting in a replication of binary (i.e., cisgender or SGM) categories. The challenge of small group-/category-specific sample sizes interlocks with the aforementioned Sample Size challenges, reinforcing the scaffolding nature of the barriers to collecting accurate and inclusive SGM data.

Clinical Services

Gathering SOGI data informs clinical knowledge and service delivery in many ways. A critical awareness of the definitions of sex, gender identity, and sexual orientation is important for all health care fields, but especially for oncofertility. In oncofertility, effective clinical discussions about options, decisions, and interventions for sexual and reproductive health demand a robust vocabulary of sexual and gender identities. AYA oncology providers are already disadvantaged due to a lack of clinical and academic attention to SGM AYAs. FP-related cis-heteronormative assumptions further hinder clinicians’ ability to effectively address SGM AYAs’ oncofertility needs. For example, under the auspices of a heteronormative paradigm, providers may assume that all AYAs want to have biological children in the context of heterosexual, monogamous, married partnerships, when in fact a range of other family-making pathways and configurations may be more suitable to SGM AYA’s needs, desires, and goals.

Poor clinical attention to SGM AYAs’ oncofertility needs not only compromises patient-provider relationships,⁷¹ but also jeopardizes other reproductive health concerns, such as sexual and gender identity development, sexual health and functioning, and relationship issues that are of equal or greater importance to SGM AYAs.⁷² These items may be of particular significance to SGM AYAs, who – by virtue of their SGM identities – may already face assisted and alternative pathways to reproduction and family-building. For example, T/N AYAs express hesitancy to disclose their gender identity for fear that access to fertility treatments will be denied, and elude expressing parenting desires because they are worried gender-affirming treatments will be withheld.^52,73 While attention to the broader psychosexual aspects of AYA oncofertility has recently emerged,^74–77 a lack of robust research of SGM AYA oncofertility and, consequently, delayed clinical attention to SGM AYAs’ oncofertility needs falls short in accounting for the complexity of reproductive health, sexuality, and family-making needs among SGM AYAs.²⁶ Therefore, further studies, especially those with strong clinical implications, are needed to ensure that oncofertility research does not pay disproportionate attention to issues of heterosexual FP and inadvertently place secondary emphasis on more inclusive issues for patients of diverse sexual and gender identities.

DISCUSSION

The trifecta of challenges to conducting accurate and inclusive SGM AYA oncofertility research are interrelated. As such, solutions to these obstacles require comprehensive, multilevel problem-solving. In this section, we discuss recommendations for addressing the three domains to improve the SGM knowledge base for oncofertility research and practice.: considerations for addressing 1. Sample Size; 2. Measurement; and 3. Clinical Services.

Considerations for addressing Sample Size

The challenge of developing large sample sizes of SGM AYAs can be addressed using multiple strategies. First, oncofertility researchers may benefit from partnerships with experts in SGM health care. Such partners may include local-, state-, or national-level community organizations; experts in SGM psychosocial and medical needs; an AYA youth advisory board; and SGM individuals. These relationships may serve as mutually informative collaborations. That is, not only may consultants to oncofertility researchers advise about best practices for conducting SGM-focused research, but oncology researchers may also inform their partners about appropriate survey questions or points of discussion to raise with AYAs related to cancer risk. Building partnerships with organizations and individuals requires time, personnel, and funding. Therefore, resources for partnership-building ought to be included in grant budgets and timelines at the outset. Furthermore, because the burden of educating professionals about their needs often falls onto marginalized individuals, it is appropriate to compensate SGM advisors for their expertise and counsel.⁷⁸

Secondly, innovative approaches to sampling methods may increase sample size. Research has shown that high SGM non-response rates may be over-estimated, and when tailored SGM recruitment strategies are employed, SGM participation rates may be higher than their heterosexual-identifying counterparts.⁷⁹ Therefore, it is important to integrate greater awareness of current queer cultures into all recruitment methods. Researchers may educate their IRB and its members about the importance of sexual health research with SGM, the scope and level of risk involved in questioning SGM about their needs, and the harm done by excluding minors from these studies. The National Academies encourage providers to collect SOGI data in the electronic health record (EHR) as a required set of demographics for all patients.⁸⁰ Cancer registries are also encouraged to collect and store SOGI data such that registry-based enrollment of SGM participants are readily available for large survey studies. Publications of qualitative studies with small sample sizes that rely upon convenience and snowball sampling may elaborate upon the context of their sampling methods such that a greater understanding of the SGM research landscape is elevated in empirical discourse. In a research environment where nationally representative data are considered the gold standard, convenience or snowball sampling may appear to lack generalizability and subsequent impact. Authors sometimes frame these methodological choices as study limitations; however we suggest that researchers utilize qualitative publications as a platform for educating readers about the appropriateness of these sampling methods in a population where a generalizeable knowledge base is not yet established. Furthermore, until a generalizeable knowledge base is established, we encourage researchers to continue collecting SGM AYA data by any ethical means necessary.

Lastly, the term “SGM” indicates a broad spectrum of individuals who’s sexual and gender identities and expressions vary across time and cultural context. As discussed in Measurement, accurately identifying in-group variation poses ontological and epistemological challenges to study design. Nevertheless, we suggest casting a wide net during recruitment and grappling with in-group categorization in the analysis phase. Framing inclusion criteria in explicit terms in recruitment materials will increase the likelihood that SGM-identifying participants will see themselves represented in the study and subsequently enroll. The term “sexual and gender minority” is not likely to resonate with most participants, and specific identity-based terminology is constantly evolving, especially among young people. Therefore, SGM and AYA consultants to oncofertility researchers can advise about the most relevant, affirming, and up-to-date local terms that will capture as many SGM participants as possible to intervene upon Sample Size challenges.

Considerations for addressing Measurement

The accurate use of pluralistic terminologies to describe gender and sexual identity can be improved through critical attention to operationalizing SGM categories and their particular meanings in a given context. Sex, gender identity, and sexual orientation are three distinct dimensions of human development, though response categories often conflate these domains (e.g., items associated with gender such as “man/woman” are provided as response categories for questions about sex, which correspond to response categories “male/female”). Therefore, Table 1 articulates the three interlocking dimensions of identification and offers pocket-guide descriptions of the corollary terminologies, which may be used in demographic survey items, electronic health records, and clinical intake forms (see Table 1^81,82). In light of the broad spectrum of terminologies across multiple domains of human development, it is important for researchers to understand the terms of SGM identification and the permutable relationships amongst them.

TABLE 1.

Pocket Guide for Sex, Gender Identity, Sexual Orientation^*

Term		Description
[1]	Sex	Refers to biological or physical attributes such as external genitalia, sex chromosomes, and internal reproductive structure.
[2]	Sex assigned at birth	Refers to the sex an individual is formally assigned at the time of birth based on external genitalia. Assigned female at birth (AFAB) or Assigned male at birth (AMAB) are commonly used acronyms to describe sex assigned at birth as indicated on the birth certificate.
[3]	Female	Refers to a person born with external genitalia (vulva), sex chromosomes (xx), and internal reproductive structures (cervix, uterus, ovaries).
[4]	Male	Refers to a person born with external genitalia (penis, testicles), sex chromosomes (xy), and internal reproductive structures (prostate).
[5]	Intersex	Refers to a person born with naturally occurring variation in external genitalia, sex chromosomes, and/or internal reproductive structures. Intersex individuals constitute approximately 2% of the population.
[6]	Gender Identity	Refers to a person’s internal sense of self regarding a multitude of genders.
[7]	Gender Expression	Refers to a person’s outward presentation, appearance, and behaviors.
[8]	Cisgender	Refers to classification of gender in which gender identity aligns with sex assigned at birth.
[9]	Non-cisgender	Refers to a classification of gender in which gender identity does not align with sex assigned at birth.
[10]	Woman/girl	Refers to a person whose gender identity aligns with their sex assigned at birth as female.
[11]	Transfeminine	Refers to a person whose gender identity does not align with their sex assigned at birth, who presents as feminine.
[12]	Man/boy	Refers to a person whose gender identity aligns with their sex assigned at birth as male.
[13]	Transmasculine	Refers to a person whose gender identity does not align with their sex assigned at birth, who presents as masculine.
[14]	Nonbinary	An umbrella term for persons who transcend commonly held concepts of binary gender. Other terms for this might include gender expansive, gender creative, genderqueer, or gender fluid. Some nonbinary people also identify as transgender. Some nonbinary people use the term “enby” (pronounced N.B.) to self-identify.
[15]	Two-Spirit	A term used in some Native American and indigenous cultures to describe a transgender or nonbinary person.
[16]	Transgender	Refers to a person whose gender identity does not align with their sex assigned at birth.
[17]	Agender	Refers to a person who does not identify or associate with any gender.
[18]	Sexual Orientation	Refers to how a person characterizes their sexual attraction to others, which may or may not include emotional/romantic attraction.
[19]	Lesbian	A term that describes a woman who is emotionally, romantically, and/or and sexually attracted to women.
[20]	Gay	A term that describes a person who is emotionally, romantically and/or sexually attracted to others of the same gender.
[21]	Bisexual	An umbrella term that describes a person who is emotionally, romantically, and/or sexually attracted to people of more than one gender. Some people use this language interchangeably with pansexual, fluid, omnisexual, or queer as a signifier of being multisexual, versus monosexual (persons who are only attracted to one gender, such as gay, lesbian, and heterosexual individuals).
[22]	Pansexual	A term to describe a person whose emotional, romantic, and/or sexual attraction is not determined by the sex, gender, or sexual orientation of their partner(s).
[23]	Asexual	A term to describe a person who experiences little to no sexual attraction to others. Asexuality is a spectrum and does not always preclude romantic or emotional attraction. The abbreviation “ace/ spec” (asexual spectrum) is sometimes used to self-identify.
[24]	Demisexual	A term to describe a person whose sexual attraction is explicitly contingent upon a close emotional bond with partner(s). Demisexuality is sometimes seen as an identity along the asexual spectrum, though not all people who identify as demisexual identify as on the asexual spectrum.
[25]	Non-monogamy (non-monogamous)	Refers to relationship configurations in which all parties consensually agree that more than two individuals may be involved emotionally, romantically, and/or sexually.
[26]	Men who have sex with men/women who have sex with women (MSM/WSW)	Refers to a technical term that is often used in research and public health settings to collectively describe those who engage in same-sex sexual behavior, regardless of their sexual orientation or self-identification. However, people rarely use the terms MSM or WSW to describe themselves.
[27]	Straight/Heterosexual	A term to describe a person whose gender identity aligns with their sex assigned at birth, and who is emotionally, romantically, and/or sexually attracted to those of a different gender.
[28]	Cis-heteronormative	Refers to an ideology that views cisgender heterosexuality as normal and views any gender identity or sexual orientation that differs from “cis-heteronormative” identity or behavior as deviant. The abbreviation “cis-het” is sometimes used to describe this term.
[29]	Queer	An umbrella term used to describe any person who views their sexual orientation and/or gender identity as outside of cis-heternormative societal norms. This term has both identity-based and political implications. While this term has been historically used as a derogative, many advocates have “reclaimed” the term and associate it’s meaning with pride in authenticity.

^*Welcoming Schools² and Fenway Institute³ were used as guides for constructing this table.

Operationalizing these categories for data collection and statistical analysis requires critical approaches to study design. Table 2 suggests demographic items that yield descriptive data that are amenable to nuanced statistical analyses. Demographic items indicated in Table 2 correspond with the three dimensions of identification (sex, gender identity, sexual orientation) described above, some or all of which may be useful to investigators depending upon the research question or hypotheses driving their study. For sex, the question asks about sex assigned at birth. For gender identity and sexual orientation, the suggested question format begins with a list of permutable, mutually exclusive categories based on self-reported “best fit,” and is followed by an open response prompt. Such a format lends itself to both nuanced identity-based data collection as well as codes that are compatible with statistical calculation. If issues of statistical power arise and collapsing categories becomes necessary for inferential analyses, we suggest collapsing categories that are most similar (e.g. pansexual and bisexual are more alike than asexual and pansexual) as opposed to collapsing all SGM categories in order to compare them to their cis-heterosexual counterparts. Furthermore, in coding for statistical analyses (e.g., regressions), researchers tend to allocate cis-heterosexual respondents as the reference category (e.g., 1), which dichotomizes them against SGM respondents, thereby replicating the binary identity construct. While it is important for participant-facing data collection tools to present accurate and inclusive language, it is equally important for study design to uphold internal theoretical consistency and make proportionate attempts to incorporate “queer insights” into analytic methods, lest the ultimate analysis undermine the efforts of the survey instrument to be inclusive.

TABLE 2.

Suggested Demographic Items for Sex, Gender Identity, Sexual Orientation

Category	Suggested Items
Sex	Which of the following describes your sex assigned at birth? (Select one)
	□ Female
	□ Male
	□ Intersex
Gender Identity	What is your gender identity in your own words? Which of the following best fits your gender identity? (Select one)____________
	□ Woman/Girl/Transfeminine
	□ Man/Boy/Transmasculine
	□ Nonbinary
	□ Two Spirit
	□ Cisgender
Sexual Orientation	What is your sexual orientation in your own words? Which of the following best fits your sexual orientation? (Select one)
	□ Lesbian
	□ Gay
	□ Bisexual
	□ Pansexual
	□ Asexual/Demisexual
	□ Queer
	□ Straight/Heterosexual
Pronouns	What are your pronouns?
	□ They/them/theirs
	□ She/her/hers
	□ He/him/his
	□ Ze/Zem/Zirs
	□ Ze/Hir/Hirs
	□ Another pronoun that is not listed____________
Honorifics	How should you be addressed?
	□ Mx.
	□ Ms.
	□ Mrs.
	□ Mr.
	□ Dr.
	□ Another honorific that is not listed____________
Name	What name should be used?

In terms of operationalizing survey software that utilizes algorithmic skip-patterns, critical assessment of the study aims will support alignment between the contingent survey logic and respondents’ identities. If the study objectives are to address biomedical, physiological, or anatomical concerns, sex assigned at birth may serve as the organizing principle for the algorithm. Conversely, a psychosocial study emphasizing interpersonal relationships may utilize gender identity as the algorithmic principle. As much as possible, researchers are encouraged to utilize gender non-specific language throughout questionnaires (e.g., “parenthood” as opposed to “mother/fatherhood”; “genitialia” and “gametes” as opposed to gendered body parts) to minimize the need for complex skip-logic (see Trans Health Research report for a useful guide to survey skip-patterns with T/N respondents). Finally, cognitive interviews with SGM AYA advisors may be used to pilot test the clarity of the questionnaire before commencing data collection.⁸³

Lastly, Table 2 provides suggested demographic items for pronouns, honorifics, and name. While these items may be less applicable to survey questionnaires, we endorse the practice of distributing these items to participants as screening sheets prior to conducting qualitative interviews or focus groups. Accurate use of participants’ pronouns, honorifics, and name (which may differ from medical records) improves rapport and maximizes effectiveness of interactional data collection. Furthermore, these items are useful to include on clinical intake forms so as to improve upon affirming patient-provider relationships when confronting Clinical Services.

Considerations for Addressing Clinical Services

Collecting, analyzing, and disseminating accurate and inclusive data are essential for improving upon high-quality care for the SGM population. However, unless findings are operationalized within health care systems and direct patient-provider interactions, their impacts on the lives of SGM AYAs will be minimal. As such, ongoing integration of academic research into clinical practice is necessary.

Table 3 provides a selection of resources for providers to consider for self-education and self-assessment about gender-inclusive practice. To the best of our knowledge, there are no existing decision aids or standardized resources for SGM AYA oncofertility service delivery. Therefore, we call for development and incorporation of tailored decision aids and guidelines into clinical practice. Meanwhile, it is important for providers to continuously engage in education, training, and self-assessment⁸³ as queer cultures are ever-evolving, and new interactive technologies are constantly emerging, especially among young people. Additionally, clinicians are encouraged to view education and training as ongoing efforts because shifting the clinical culture is an iterative process, and high turnover rates – especially among staff members – calls for continuous reinforcement of the clinical cultural. Regular workshops may count toward Continuing Education Units (CEUs) and Continuing Medical Education credits (CMEs) in settings where such professional development is required. Furthermore, multi- and inter- disciplinary, system-wide trainings that span the health care continuum will improve oncofertility services for SGM AYAs, including trainings for professionals in oncology, hematology, surgery, endocrinology and reproductive medicine, andrology, urology, adolescent medicine, social work, psychiatry, genetic counseling, nursing, and clinical staff.

TABLE 3.

Tool Table for Informative SGM Resources

Organization	Resource
National LGBTQIA+ Health Education Center	Provides educational programs, resources, and consultation https://www.lgbtqiahealtheducation.org/
National Institutes of Health Sexual & Gender Minority Research Office	Coordinates sexual and gender minority related research and activities by working directly with NIH Institutes, Centers, and Offices https://dpcpsi.nih.gov/sgmro
The Youth Risk Behavior Surveillance System	Provides nationally representative youth health surveillance data https://www.cdc.gov/healthyyouth/data/yrbs/index.htm
The Transgender Training Institute	Provides health professional development and personal growth training, technical assistance and capacity building https://www.transgendertraininginstitute.com/
OutCare	Provides health care cultural competency training https://www.outcarehealth.org/
Adolescent Health Initiative	Provides self-assessment and service improvement self-evaluation https://www.umhs-adolescenthealth.org/
Health Care Equality Index	Provides resources for promoting health equity https://www.hrc.org/resources/healthcare-equality-index
Escape	Provides a platform for LGBTQIA+ AYA patients, survivors, and caregivers https://www.escapeayac.org/
Transcend the Binary	Published 2020 guidelines regarding “Trans Health Research: Research Priorities, Best Practices, Dissemination” https://www.transcendthebinary.org/
Trans Inclusive Provider Scale	Scale for clinician self-assessment of trans- inclusivity Kattari SK, Curley KM, Bakko M, Misiolek BA. Development and Validation of the Trans-Inclusive Provider Scale. American Journal of Preventive Medicine. 2020;58(5):707–714. doi:10.1016/j.amepre.2019.12.005

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While the urgency to improve inclusive AYA care is pressing, clinicians are reminded that small cultural shifts may have a significant impact on SGM AYAs sense of safety and care. For example, in-person patient-provider communication between oncologists and SGM patients is greatly improved when providers ask for patients’ name and pronouns as well as share their own.⁴⁶ Advocating for hospital IT departments to enable prominent display of SOGI data, pronouns, and preferred names in the EHR normalizes the practice of pronoun/preferred name use. Per best practice guidelines,⁸⁴ oncologists are encouraged to create opportunities to speak privately with all minor and adult patients. SGM AYAs may not be comfortable discussing sexual health or fertility preservation with parents or support people; or, they may not be “out” and may fear consequences of disclosure such as disapproval, or removal from parental insurance coverage. While in-depth rapport building may not be possible at the time of FP decision making (due to its expedient nature), the aggregate of these small cultural shifts primes patients and providers for improved clinical encounters. Finally, as COVID-19 advances the primacy of e-health and telemedicine, it is important to migrate the practice of name and pronoun checking, and private counseling, to telehealth avatars, usernames and video conferences.

In sum, working to reify the broad scope of oncofertility services beyond FP is suggested as a future direction for oncofertility practice. Affirming sexual health education, psychosocial care for relationship concerns, non-cisheternormative counseling about future family-making pathways, and supportive discussion about shifting gender and sexual identities in light of changing fertility status will improve services for all AYAs, though specifically for SGM AYAs.

Limitations

It is important to note the limitations in our article. While the content presented here addresses several of the barriers to conducting accurate and inclusive research with SGM AYAs, our catalog of challenges and solutions is not exhaustive. Furthermore, the suggested identity categories and terminologies are accurate to the best of the authors’ knowledge at the time of writing (April 2022). Queer insights are “constantly becoming”^61,67 perspectives on the most affirming ways to understand and respond to the needs of SGM AYAs, which change frequently and must be updated with regularity. As such, to orient scientific inquiry from a queer perspective – which we call for in this article – means to undertake rigorous investigations with an enduring commitment to the notion that identity is a creative, evolving, and fluid entity.

CONCLUSION

The delivery of empirically informed oncofertility services for SGM AYA cancer patients must rely upon sound facts and rigorous analyses from valid and reliable research design and data. Unresolved challenges to accurately and inclusively capturing and representing sex, gender, and sexual orientation in oncofertility research lead to problematic gaps in population knowledge about SGM needs. Critical attention to research approaches – such as sampling and measuring the population – and to the clinical application of findings will improve upon high quality, affirming oncofertility service delivery for SGM AYAs.

Public Health Significance:

Unresolved challenges to conducting valid and reliable research with sexual and gender minority (SGM) adolescent and young adult (AYA) cancer patients have resulted in a lack of knowledge about this population’s psychosocial, sexual and reproductive health needs. This article provides discussion about and recommendations for improving research approaches with SGM AYAs.