Leveraging Quality Measurement to Drive Equitable Cancer Care for Transgender Individuals

 J Clin Pathways. 2023;9(4):3-7. doi:10.25270/jcp.2023.07.01

Initiatives to address inequities in cancer care have focused on disparities among racial and ethnic minority groups and medically underserved populations.¹ Less attention has been given to enduring disparities in cancer care and outcomes across gender identities.

Gender identity is an individual’s personal feeling of whether they are a woman, man, or have no gender, as opposed to biological sex (eg, female vs male), which is assigned at birth and based on anatomy.^2,3 Additionally, while research on the population is nascent, youth surveys from 2022 indicate that nearly half of LGBTQ+ youth identify as nonbinary (ie, not male or female) or gender non-conforming, so the number of people who do not identify as their sex assigned at birth may be growing.^4,5

While not adequately studied to date, multiple cancer care inequities and barri­ers confront the transgender and gender-diverse populations who represent approxi­mately 0.5% of the US adult population.^2,6 This includes inequities across the cancer care journey as described below, such as delayed cancer diagnosis and worse clinical outcomes.³ Efforts to reduce inequities across the cancer care continuum generally must identify and address the specific care needs of transgender individuals.⁷

Quality measurement plays a key role in identifying gaps in care and monitoring progress toward high-quality, equitable cancer care and outcomes.⁸ This manuscript explores several measurement tactics to drive care quality improvement for trans­gender individuals: updating quality measures and clinical guidelines to be inclusive of transgender people, stratifying existing quality measures by gender identity to identify disparities, and developing new quality measures to address the specific care needs and outcome inequities experienced by transgender patients.

It is widely recognized that transgender individuals experi­ence worse overall health and care outcomes than cisgender individuals (individuals whose gender identity corresponds to their sex assigned at birth), and these disparities are perpetuated and exacerbated by discrimination, socioeconomic risk factors, and pervasive barriers to health care access. Transgender adults in the US are more likely to report poor physical and mental health, including higher rates of depression, smoking, sexually transmitted infections (STIs), and chronic illnesses like asthma and cardiovascular disease.^9,10

Transgender individuals also face a variety of barriers to health care that can limit access and lead to adverse care ex­periences.¹¹ These barriers include mistreatment, harassment, health care provider (HCP) discomfort or inexperience with treating transgender individuals, and denial of transition-relat­ed care by HCPs, all of which may contribute to high rates of care avoidance.¹¹ A 2020 survey by the Center for American Progress (CAP) found that almost half of transgender individu­als reported experiencing mistreatment and abuse from HCPs, with higher rates reported among Black, Hispanic, Asian, and multiracial transgender individuals.⁹ In addition, transgender individuals often face insurance-related barriers to care. In comparison to cisgender adults, transgender adults are more likely to be uninsured, experience coverage denial, and report financial barriers to care access.^12,13

All these barriers may limit access to quality oncology care for transgender individuals. While data on the subject are lim­ited, researchers have documented inequities across the cancer care journey, including diagnosis at more advanced cancer stag­es, reduced likelihood of receiving treatment, and lower sur­vival rates for various types of cancer.³ Given the demonstrated health care access barriers and inequities in cancer care and out­comes among transgender individuals, the time is long overdue to leverage quality measurement to promote high-quality care and cancer outcomes for this population.

Many quality measures, including several cancer screening measures, use gender-based eligibility criteria. The language used in these measures can inadvertently exclude transgender or nonbinary individuals.¹⁴ For instance, the Cervical Cancer Screening measure currently evaluates “the percentage of women” screened for this cancer type. This inappropriately ex­cludes transgender men or nonbinary individuals with cervixes and includes many individuals without cervixes. Excluding an already-underserved population from quality measurement and accountability programs will not encourage improvement in the significant disparities in cancer screening and other forms of preventive care for transgender individuals.¹⁵ Updating in­clusion criteria in these screening measures, particularly those already included in prominent payment programs, will remind clinicians to provide necessary care for all people, including transgender individuals.¹⁶

Though some clinical practice guidelines detail care for transgender patients,¹⁷ many guidelines still do not use inclu­sive language in their recommendations,^7,18 presenting a chal­lenge to clinicians who want to understand how to provide high-quality care. This is also a barrier for measure developers who wish to develop inclusive quality measures, since clinical guidelines serve as a key source of evidence for quality measure development. Protracted timelines for developing guidelines and measures can result in a lag between emerging evidence and new measures.

The National Committee for Quality Assurance (NCQA), a key measure developer for health plan accreditation and value-based payment, has promised to review their Healthcare Effec­tiveness Data and Information Set (HEDIS) measures to ensure inclusivity and help transgender individuals access necessary care.¹⁹ NCQA has proposed revisions to the gender definition in both its Cervical Cancer Screening and Breast Cancer Screen­ing measures to be more inclusive.²⁰ Other measure stewards, such as the Centers for Medicare & Medicaid Services (CMS) and the American Society of Clinical Oncology (ASCO), should also revisit their measures to ensure inclusivity.

Health providers, payers, policymakers, and researchers can stratify data from quality measures already in use by gender identity to identify inequities. CMS,21 ASCO,22 and the Na­tional Academies of Sciences, Engineering, and Medicine²³ have stated the importance of collecting sexual orientation and gender identity (SOGI) data to evaluate and reduce care inequities, a key step toward measure stratification to advance equity. For instance, stratifying cervical cancer screening mea­sure data by SOGI categories revealed lower screening rates among transgender men compared to cisgender women at three Federally Qualified Health Centers.²⁴ In addition to identify­ing gaps in equitable care, quality measure data stratification can encourage improvement in equity when implemented in programs that hold providers and payers accountable for the provision of quality care across patient groups. Stratification also supports identifying inequities and pathways for improve­ment for policymakers, payers, and health care providers and organizations.²⁵

Despite the benefits of quality measure data stratifica­tion by gender identity, sample size and data collection limi­tations pose barriers. Systematic documentation of gender identity data is key to supporting quality measure stratifica­tion efforts. While CMS requires that certified electronic health records (EHRs) have the capacity to collect SOGI data, actually collecting this data is not required.26 Although SOGI data reporting for adult patients was introduced in the Uniform Data System (UDS) requirements in 2016,²⁷ uptake is limited in the US.²⁸ Payer claims usually do not include gender identity information, leaving researchers to rely on limited proxies to identify transgender individuals,²⁹ such as diagnosis–gender mismatch (eg, prostate cancer in a patient coded as female), indications of potential gender-affirming hor­mone therapy, or gender identity disorder diagnosis codes.³⁰ Researchers have emphasized that it is unreliable to use diagno­sis codes related to transgender identity to identify transgender individuals in datasets, which can result in an underestimation of the transgender population.³¹

Some states and health care quality stakeholders aim to ad­dress gaps in SOGI data collection. For instance, California implemented requirements for the collection and reporting of SOGI data in 2020, Illinois followed in 2021, and Vermont recently enacted legislation requiring state entities to disag­gregate individual health data by gender identity, among other categories.^26,32 At the national level, NCQA proposed adding SOGI data collection requirements for adult patients in their 2023 Health Equity Accreditation standards.³³ In addition to data collection requirements, HCP cultural competence and communication training is necessary to support effective col­lection of gender identity data in an affirming care environ­ment.³⁴ Without any sign that an HCP is welcoming of all gen­der identities, individuals are likely to be hesitant to disclose their gender identities due to privacy and stigma concerns.₃₅

Even if the barriers to collecting SOGI data are overcome, the relatively small transgender population size limits the abil­ity of health care insurers and providers to draw meaningful conclusions about quality measure performance and compari­sons among groups. The small numbers issue is compounded by the established challenge of small population sizes for many types of cancer care quality measurement in general.^₃₆ Using multiple data sources or collapsing data across years are two of the primary methods researchers have used to counter small sample size throughout research, but these methods may not be applicable for quality measures used in value-based pay­ment models.

Consider new quality measures specific to the care needs of transgender individuals

In addition to updating and stratifying existing quality mea­sures, developing new measures to address care for transgender people is necessary to drive systemic change and promote high-quality care. This includes the development of measures spe­cific to care and outcomes for transgender individuals, as well as new measures that are not specific to transgender care but still address key care gaps for this population.

Developing quality measures specific to transgender patients requires consideration of the barriers discussed above: data in­adequacies, relatively small sample sizes, and a limited evidence base. Despite these constraints, work is ongoing to develop qual­ity measures for care of transgender patients. A technical expert panel recently convened to evaluate eight novel candidate qual­ity measures for transgender patients.¹⁷ The only measure topic directly relevant to cancer care was breast cancer screening for patients who received estrogen therapy, and the panelists did not support further development of this measure. Only 3.1% of eligible patients had received the screening, and panelists noted that the measure was both too prescriptive and based on limited evidence. In addition to reviewing candidate measures, the panelists emphasized that quality measures for transgender patients must accommodate diverse patients, individualize care endpoints, and avoid promoting further stigmatization.

Quality measures that address the care needs of transgen­der patients and apply to a broader patient population can help surmount measurement challenges due to small sample size and develop measurement infrastructure. For instance, a qual­ity measure focused on SOGI data collection could incentivize documentation of gender identity in the EHR. This measure could potentially improve data collection barriers for other quality measures, support person-centered care for patients, enable measure stratification to identify care gaps and dispari­ties among transgender individuals as well as other LGBTQ+ groups, better delineate clinical outcomes among transgender individuals from both standard and investigational therapies, and improve gender-based lab and clinical results interpreta­tion and chemotherapy dosing. Quality improvement efforts (eg, improvement activities) could also focus on data collection using an anatomical/organ inventory form, which captures organ diversity.³⁷ However, implementing quality measures and improvement activities requires careful consideration to avoid unintended consequences such as further eroding trust or stigmatizing the transgender population.

Develop new measures to address broader care gaps that disproportionately impact transgender individuals

In addition to quality measures specific to transgender patients, measures should be developed to address broadly applicable care gaps that also severely impact transgender populations. A po­tential measure topic is patient experience of stigma and/or dis­crimination during medical care. In 2015, 33% of US Trans Sur­vey (USTS) respondents who had seen an HCP in the last year reported having at least one negative experience related to their gender identity.¹¹ Survey questions that address this topic could potentially be added to existing patient-reported outcome mea­sures, such as the Consumer Assessment of Healthcare Providers and Systems survey, as well as the cancer experience of care sur­vey used in the announced Enhancing Oncology Model from CMS.³⁸ For instance, NCQA recommended that state Medicaid programs use a survey question to evaluate whether members have experienced discrimination in medical settings and what the members believe to be the main reason for that experience (eg, gender, sexual orientation, race).³⁹

Transgender individuals also disproportionately face insur­ance-related barriers to care, such as coverage denial. In 2015, 25% of USTS respondents reported experiencing insurance issues related to being transgender, including coverage denial for gender transition–related care.¹¹ Researchers found that 25% of all initial Medicaid claim submissions resulted in denied payments for at least one service.⁴⁰ This is particularly troubling for the transgender population, since only 25 states explicitly guarantee gender-affirming care coverage under Medicaid.⁴¹ Transgender individuals may also be denied insurance coverage for routine health care, such as sexual and reproductive health screenings.¹¹ While ASCO has emphasized the importance of ensuring insurance coverage for sexual and gender minority cancer care,⁴² insurers may still fail to cover cancer screening and treatment, citing gender-based coverage policies.⁴³

The American Hospital Association (AHA) has strongly rec­ommended that regulators publish health plan performance re­lated to prior authorization, payment delay, claim denial rates, and rates of overturned denials, and to leverage financial pen­alties in the case of poor health plan performance.⁴⁴ In 2020, CMS stated that they would consider proposing a Star Ratings measure related to prior authorization.⁴⁵ However, CMS did not outline a timeline for rollout, nor discuss the measure in subsequent Advance Notices. Mandating public reporting of health plan care denial and delay rates will encourage insurers to stop inappropriate and often illegal denial of coverage for gender-affirming care.⁴⁶

All the quality efforts recommended above require meaningful representation and engagement of transgender individuals to be most effective. The Table provides an overview of measure recommendations discussed in this paper, including entities that could be held accountable for measure performance. Transgender individuals should be represented in initiatives re­lated to care delivery; research; and the development of clinical guidelines, quality measures, and insurance coverage policies. We acknowledge that the authorship of this manuscript itself is primarily cisgender researchers. We welcome feedback and fur­ther discussion from the transgender community in particular, along with the broader community of health care professionals and consumers.

The health care system is slowly adapting to become more inclusive and affirming of transgender individuals. However, progress has been inconsistent and incomplete, allowing the perpetuation of disparities in health care access, quality, and health outcomes for transgender people. The development of quality measures that specifically aim to promote the inclusion, health, and health care of transgender people would be an im­pactful advancement toward closing these gaps and ensuring that all transgender people have access to high-quality, patient-centered, and affirming care.

Authors: Elizabeth Donckels, MSPH¹; Nina Regenold, MSc¹*; Theresa Schmidt, MA¹; Will Nolan¹*; Scout²; Don S. Dizon, MD^3,4; Tom Valuck, MD, JD¹

Affiliations: ¹Real Chemistry, Washington, DC; ²The National LGBT Cancer Network, Providence, RI; ³Lifespan Cancer Institute, Providence, RI; ⁴Legorreta Cancer Center, Brown University, Providence, RI;

*Current affiliations: Scholastic, New York, NY (W.N.); NORC at the University of Chicago, IL (N.R.).

Address correspondence to: 

Theresa Schmidt, MA

701 8th St NW

Washington, DC 20001

Email: tschmidt@realchemistry.com

Disclosures: E.D., N.R., T.S., and T.V. reported employment with Real Chemistry at time of article submission.