Endocrine Health and Health Care Disparities in the Pediatric and Sexual and Gender Minority Populations

An Endocrine Society Scientific Statement

Alicia M. Diaz-Thomas; Sherita Hill Golden; Dana M. Dabelea; Adda Grimberg; Sheela N. Magge; Joshua D. Safer; Daniel E. Shumer; Fatima Cody Stanford

Disclosures

J Clin Endocrinol Metab. 2023;108(7):1533-1584. 

In This Article

Abstract and Introduction

Abstract

Endocrine care of pediatric and adult patients continues to be plagued by health and health care disparities that are perpetuated by the basic structures of our health systems and research modalities, as well as policies that impact access to care and social determinants of health. This scientific statement expands the Society's 2012 statement by focusing on endocrine disease disparities in the pediatric population and sexual and gender minority populations. These include pediatric and adult lesbian, gay, bisexual, transgender, queer, intersex, and asexual (LGBTQIA) persons. The writing group focused on highly prevalent conditions—growth disorders, puberty, metabolic bone disease, type 1 (T1D) and type 2 (T2D) diabetes mellitus, prediabetes, and obesity. Several important findings emerged. Compared with females and non-White children, non-Hispanic White males are more likely to come to medical attention for short stature. Racially and ethnically diverse populations and males are underrepresented in studies of pubertal development and attainment of peak bone mass, with current norms based on European populations. Like adults, racial and ethnic minority youth suffer a higher burden of disease from obesity, T1D and T2D, and have less access to diabetes treatment technologies and bariatric surgery. LGBTQIA youth and adults also face discrimination and multiple barriers to endocrine care due to pathologizing sexual orientation and gender identity, lack of culturally competent care providers, and policies. Multilevel interventions to address these disparities are required. Inclusion of racial, ethnic, and LGBTQIA populations in longitudinal life course studies is needed to assess growth, puberty, and attainment of peak bone mass. Growth and development charts may need to be adapted to non-European populations. In addition, extension of these studies will be required to understand the clinical and physiologic consequences of interventions to address abnormal development in these populations. Health policies should be recrafted to remove barriers in care for children with obesity and/or diabetes and for LGBTQIA children and adults to facilitate comprehensive access to care, therapeutics, and technological advances. Public health interventions encompassing collection of accurate demographic and social needs data, including the intersection of social determinants of health with health outcomes, and enactment of population health level interventions will be essential tools.

Introduction

Recognizing that health disparities exist among population subgroups with respect to disease burden, comorbidities, and outcomes, the Endocrine Society released its inaugural scientific statement on health disparities in 2012. These disparities continue to be pervasive throughout the world, making inequities in health and health care among the most pressing issues facing science and medicine today. Our expanded understanding of factors that contribute to these disparities recognizes that biological differences associated with poor disease outcomes in marginalized communities result from unequal access to high-quality health care and social conditions and policies that perpetuate health inequities. In 2008, the World Health Organization (WHO) Committee on Social Determinants of Health (SDoH) published a report proposing the ambitious goal of achieving health equity within a generation stating "Social injustice is killing people on a grand scale".[1]

Given endocrinology's expansive scope, the inaugural statement focused on health disparities in highly prevalent endocrine conditions in adults. These included type 2 diabetes mellitus (T2D) and related conditions (prediabetes and diabetes complications), gestational diabetes, metabolic syndrome with a focus on obesity and dyslipidemia, thyroid disorders, osteoporosis, and vitamin D deficiency. A high-level summary of findings from the 2012 scientific statement is included in Table 1. The statement reported that that for certain endocrine disorders (1) there were discrepancies between incidence and mortality by race/ethnicity and sex; (2) obesity and body fat distribution were important contributors to race/ethnic and sex differences in disease incidence and outcomes; (3) heterogeneity in subgroups of Hispanic American and Asian American people resulted in disparities within these groups, and (4) genetic differences were not significant contributors to disparities. Several themes emerged in the statement, including a need for basic science and translational studies to explore underlying molecular mechanisms that may contribute to endocrine health disparities, in addition to the need to explore the etiology in clinical, population-based, and health services research studies.

Since publication of the 2012 scientific statement, health and health care disparities have continued to plague our societies globally, as highlighted by the COVID-19 pandemic. Endocrine conditions, particularly diabetes and obesity, have been highlighted as enhancing mortality risk among people with COVID-19. Because these endocrine disorders are highly prevalent in Black, Hispanic, Native American, and Pacific Islander communities, people in these groups have experienced higher mortality rates in the setting of COVID-19. The disproportionate impact of health disparities on these populations again highlights the importance of addressing the underpinnings of these disparities and working to eradicate them. Most recently, medical societies have acknowledged that race is a social and not biological construct, and gender "inhabits a complex social system that structures the life experience of human beings".[2,3] Several medical societies, including the Endocrine Society, have called for the re-examination, if not elimination, of race-based medicine.[4]

Several endocrine conditions and vulnerable populations were not addressed in the inaugural statement due to insufficient data. However, over the last 10 years, new information has drawn attention to additional populations where disparities in endocrinology also exist. This updated scientific statement will examine disparities in and barriers to care in pediatric endocrine health disorders and endocrine care of adult and pediatric sexual and gender minority populations (SGM; eg, lesbian, gay, bisexual, transgender, queer/questioning [LGBTQ] persons). We will also conceptualize contributors to health and health care disparities with an eye toward multilevel interventions that have been shown to reduce disparities and improve clinical outcomes. While the bulk of the information presented here reflects United States (US) populations, international data will be addressed in conditions where sufficient information exists.

Research suggests that many health disparities experienced in adulthood are rooted in early childhood. For instance, exposure to stressors (in pediatrics often described as adverse childhood experiences) can negatively affect health over a person's lifetime, disrupting metabolic, neurological and immunological systems, and contributing to poor developmental outcomes.[5] There are race/ethnic/sex differences in adverse childhood experiences. Health disparities in pediatrics may negatively contribute to and complicate care for children with chronic endocrine conditions and further negatively exacerbate downstream adult morbidity and mortality. Examination of health disparities in pediatric endocrine disorders must also consider the unique characteristics of child developmental stages and the impacts of health disparities at each of these junctures, many of which are believed to be critical "windows," biologically and psychosocially. Moreover, infants, children, and teenagers do not function as independent agents of their own health care; they are subject to the ability of parents or guardians to function effectively in the health care system and society at large, and are thus characterized as vulnerable populations.

In SGM populations, health disparities exist in cardiovascular disease, malignancies, fertility, and in the ability to access necessary, timely, and appropriate high-quality medical care. We will examine how these disparities may be exacerbated by the intersection of racism, transphobia, and sexism.[6] Restrictive environments, where care is expressly prohibited, are especially deleterious for both physical and mental health outcomes for SGM populations.

In addition to examining the biological consequences of race, ethnicity, and sex in pediatric endocrine and SGM populations, we include an overview of structural factors that contribute to health disparities in these populations. With the COVID-19 pandemic, modalities of care expanded and new avenues opened for routine care of endocrine patients, such as telehealth. As noted in the 2022 Appropriate Use of Telehealth Visits in Endocrinology: Policy Perspective of the Endocrine Society, careful consideration will need to be given about how to use these tools to improve health equity, not exacerbate existing injustices.[7] The 2003 Institute of Medicine report, "Unequal Treatment,"[8] did not include SGM and pediatric populations as data then were scarce; however, issues perpetuating health disparities related to the health care system, the provider, and the patient continue to hold true for multiple marginalized populations almost 20 years after its publication.

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