Disparities in thyroid care

Introduction

The 1985 landmark Report of the Secretary’s Task Force on Black and Minority Health, commonly referred to as the Heckler Report, elevated minority health into the national consciousness. The first comprehensive study of racial and ethnic minority health conducted by the United States (US) government, the Heckler Report detailed persistent health disparities that accounted for 60,000 excess deaths each year.¹ It served as a driving force for change in research, policy, and initiatives aimed at advancing health equity at the local, state, and national level. Almost two decades later in 2003, the Institute of Medicine (IOM) published its groundbreaking report, Unequal Treatment: Confronting Racial and Ethnic Disparities in Healthcare, which found that racial and ethnic minorities tended to receive lower quality healthcare than non-minorities with resultant worse outcomes.² The IOM report also offered recommendations regarding interventions to eliminate healthcare disparities that was targeted to a broad audience. Although significant progress has been made in reducing healthcare disparities, defined by the IOM study committee as racial or ethnic differences in the quality of healthcare that are not due to access-related factors or clinical needs, preferences, and appropriateness of intervention, the elimination of disparities has yet to be achieved.²

Disparities continue to exist in the diagnosis and treatment of thyroid disease, which affects an estimated 20 million Americans, with patients of racial and ethnic minorities experiencing worse outcomes for both malignant and benign thyroid disease.³ The interaction between race, culture, and healthcare is complex, with disparities in thyroid care arising from the complex interplay of systems-, physician-, and patient-level factors. Research has suggested that in addition to socioeconomic factors and insurance status, poor access to adequate medical and surgical care for thyroid disease in minority populations plays a contributing role.^4–8 This review will provide a comprehensive summary of the evidence describing healthcare disparities in thyroid disease, examine contributing factors, and provide recommendations for multi-level strategies to reduce disparities in thyroid care.

Disparities in thyroid cancer care

Evidence of inequitable care across the thyroid cancer continuum

Racial and ethnic minorities with thyroid cancer experience a substantial burden of disease. Thyroid cancer is the second most common cancer among Hispanic and Asian/Pacific Islander women in the US, and both patient populations have the highest thyroid cancer mortality rates.^9–11 From the time of thyroid cancer diagnosis and into the survivorship period, racial and ethnic minorities experience disparities in care with resultant worse patient outcomes.¹²

Studies have consistently demonstrated that racial and ethnic minorities with thyroid cancer are more likely to present with larger tumors and more advanced disease compared with their White counterparts.^4,13–16 With regards to thyroid surgery, higher surgeon volume predicts lower complication rates and shorter length of stay.^8,17–19 In a nationwide sample of 16,878 patients who underwent thyroid surgery between 1999 to 2004, Sosa et al revealed that the majority of Hispanic and Black patients had surgery by the lowest-volume surgeons and that in-hospital mortality was higher for Black patients.⁷ Al-Qurayshi et al reported similar findings using data from 2010 to 2011, with Hispanic and Black patients with thyroid cancer more likely to receive treatment by low-volume surgeons compared with their White counterparts.¹⁷ Non-White patients with thyroid cancer are more likely to experience surgical complications, possibly secondary to care by lower volume surgeons, and more likely to not receive radioactive iodine (RAI) treatment when it was clinically indicated based on the 2015 American Thyroid Association (ATA) management guidelines for thyroid cancer.^20,21

Even in the management of anaplastic thyroid cancer, an aggressive cancer that is associated with a poor prognosis and high mortality rate, disparities exist.²² In a study of 719 patients with anaplastic thyroid cancer between 1998 and 2011, Roche et al revealed that non-White patients were more likely to receive no treatment and have a poorer overall survival.²³

Beyond the initial treatment of thyroid cancer, racial and ethnic minorities continue to have different experiences from that of their White counterparts. In a survey of 2,215 disease-free thyroid cancer survivors two to four years after their diagnosis, Papaleontiou et al found that thyroid cancer-related worry was associated with being Hispanic or Asian.²⁴ Hispanic ethnicity was also found to be associated with overestimating thyroid cancer recurrence risk in a population-based study of 1,597 patients with low-risk differentiated thyroid cancer.²⁵ Furthermore, survey-based studies have found that among Hispanic patients with thyroid cancer, differences exist based on level of acculturation. Chen et al demonstrated that while financial hardship decreased with older age for high-acculturated Hispanic women with thyroid cancer, financial hardship remained elevated across all age groups for low-acculturated Hispanic women.²⁶

Factors that contribute to inequitable care for racial/ethnic minorities with thyroid cancer

Thyroid cancer patient outcomes are influenced by multilevel factors that can be visualized as a hierarchy of needs, with the most critical need, access to high-volume physicians, at the bottom to the hierarchy (Figure 1). Disparities exist in thyroid cancer care when these needs are unmet due to the interplay of multiple systems-, physician-, and patient-level factors. Systems-level factors include health insurance and socioeconomic status, and differences in where patients seek medical care. In a retrospective study of 190,298 patients with papillary thyroid cancer diagnosed between 2004 to 2015, Ullmann et al revealed that a significant inverse correlation exists between the percentage of uninsured 18–64 years old adults in each state and the state-by-state incidence of all thyroid cancers.²⁷ The authors also found that patients with private insurance, compared to no insurance, were more likely to receive more extensive surgical and adjuvant treatment.²⁷ Similarly, studies have found that low socioeconomic status is associated with more advanced thyroid cancer and lower rates of adjuvant RAI therapy.^4,28 Hospital characteristics also have an impact, likely reflecting the health insurance and socioeconomic status of each hospital’s patient population as well as resource availability.^14,29 In a retrospective cohort study, Lim et al found that patients at a large public hospital were 3.4 times more likely to present with advanced differentiated thyroid cancer than patients at the adjacent university teaching hospital (Lim). Notably, 96% of the public hospital patients self-reported as non-White compared to 16% of the university hospital patients.²⁹ Similarly, White et al showed that guidelines from the ATA and the National Comprehensive Cancer Network (NCCN) were more likely to be followed for patients who traveled to academic centers for their thyroid cancer care compared to those who received treatment at a local hospital.³⁰

Figure 1.

Thyroid cancer patient outcomes are influenced by multilevel factors that can be visualized as a hierarchy of needs. To achieve improved thyroid cancer outcomes, it is necessary to fulfill the more critically important needs at the bottom of the hierarchy before moving on to the more advanced needs higher up in the hierarchy.

Physician-level factors that impact thyroid cancer diagnosis and treatment include variable use of thyroid ultrasound, experience with treating thyroid cancer, communication styles, conscious and unconscious biases, and cultural competency. The incidence of thyroid cancer increased substantially between 1973 until 2014, driven principally by the increased detection of small papillary thyroid cancers in the setting of widespread thyroid ultrasound screening.^11,31,32 Although the incidence of thyroid cancer has increased among all races and ethnicities, the magnitude of the increase has been larger for non-Hispanic patients than for Hispanic patients. This difference may be attributable to differential use of thyroid ultrasound by physicians.^33,34 In a diverse cohort of 602 physicians involved in the care of thyroid cancer patients, Chen et al found that while the majority of physicians reported ultrasound use for clinically supported reasons, a substantial number endorsed ultrasound use for clinically unsupported reasons of patient request (33%), abnormal thyroid function tests (28%), and positive thyroid antibodies (23%).³⁵ Furthermore, physicians in private practice were more likely to schedule ultrasounds for abnormal thyroid function tests and positive thyroid antibodies compared to those in academic medical centers.³⁵ Differences also exist in physicians’ use of thyroid ultrasound during the long-term surveillance of thyroid cancer. In a cross-sectional study of 320 physicians who reported involvement with differentiated thyroid cancer surveillance, Kovatch et al found that only 27% reported personally performing bedside ultrasonography, and 33% did not report high confidence in either their ability or a radiologist’s ability to use ultrasonography to detect cancer recurrence.³⁶ Variations in thyroid cancer treatment in the postoperative setting is also influenced by physician factors. In a population-based sample of 1,319 patients with differentiated thyroid cancer in whom selective use of RAI is recommended and shared decision making is encouraged, Wallner et al found that receipt of RAI was associated with physician attitudes and propensity to recommend RAI.³⁷

Patient-level factors that influence thyroid cancer care include patients’ understanding of the disease, level of acculturation, treatment preferences, illness perception, and physician trust. An accurate understanding of thyroid cancer is critically important and influences patients’ attitude and behavior towards the disease. Unfortunately, patients with thyroid cancer have significant unmet information needs, and this is exacerbated by preference for thyroid cancer information in a non-English language.^38–41 In a population-based survey study, Chen et al found that Hispanic women with thyroid cancer were significantly more likely to report the ability to access thyroid cancer information “all of the time” if they preferred information in English compared to Spanish.⁴¹ Furthermore, patient preference has been found to impact the intensity of thyroid cancer surveillance. Evron et al revealed that patient preference for a more maximal versus minimal approach to medical care is independently associated with increased healthcare utilization in the postoperative surveillance of thyroid cancer.⁴²

Disparities in the treatment of benign thyroid disease

Racial differences in the treatment of Graves’ Disease

Hyperthyroidism is present in about 1.2% of the US population, with Graves’ disease accounting for up to 80% of cases and being more common in Blacks compared with Whites.^43–45 McLeod et al found that compared with Whites, the incidence rate ratios (IRR) for Graves’ disease was significantly higher in Blacks (IRR 1.92 for Black women, and IRR 2.53 for Black men).⁴⁵ Independent of treatment modality, early and intensive control of hyperthyroidism in Graves’ disease is associated with decreased cardiovascular morbidity and all-cause mortality.^46–48 Treatment options for Graves’ disease include antithyroid drugs, RAI ablation, and thyroid surgery. Although the least used therapy in the US, thyroid surgery is the most effective treatment for Graves’ disease and more likely to be used in the treatment of Black patients with Graves’ disease.^49–51 In a retrospective study of 427 patients with Graves’ disease, Elfenbein et al found that Black patients in the cohort underwent surgery 56% of the time as a first-line treatment compared to 28% of non-Black patients. In univariate analysis, surgical treatment (vs RAI) was found to be associated with Black race.⁴⁴ In a study of 634 patients who were treated for Graves’ disease over a 10-year period at an urban county hospital, factors influencing the choice for surgical treatment of Graves’ disease were found to be patient preference and compressive symptoms.⁵² Although thyroid surgery is the most efficacious treatment for Graves’ disease, there is variation in the incidence of post-operative complications that likely reflects differences in surgeons’ experience and patient selection.^18,50 Among patients who underwent thyroid surgery for benign and malignant disease, Black patients were more likely to have neck hematoma and recurrent laryngeal nerve injury, unplanned hospitalization within 30 days after thyroidectomy, and negative voice outcomes compared with their White counterparts.^53–55

Factors that contribute to disparities in surgical outcomes for patients with Graves’

The observed differences in surgical outcomes for Graves’ disease may arise partially due to differences in disease presentation and existing systemic disease of Black versus White patients undergoing thyroid surgery. In a study of 1,189 patients with benign disease treated with thyroidectomy, Kuo et al found that Black (vs White) patients more commonly presented with compressive symptoms, larger thyroid glands, and after a longer disease duration.⁵⁶ Interestingly, thyroid-associated ophthalmopathy, the most prevalent extrathyroidal manifestation of Graves’ disease, has not been found to be associated with race.⁵⁷ Additionally, in a national database analysis of 1,695 patients who had undergone thyroidectomy for Graves’ disease, Beck et al found that Black (vs Non-Hispanic White) patients were more likely to have an American Society of Anesthesiology (ASA) classification of physical health score of at least 3 and higher rate of congestive heart failure.⁵⁸ In univariate analysis, patients with an ASA score of at least 3 or with congestive heart failure were more likely to have complications.⁵⁸

Ethnic differences in the treatment of hypothyroidism

Hypothyroidism is present in 4.6% of the US population (0.3% clinical hypothyroidism and 4.3% subclinical hypothyroidism).^59,60 The standard of care for treatment of hypothyroidism is levothyroxine, one of the most commonly prescribed drugs in the US with more than 11 million prescriptions filled in 2016.^61–63 However, disparities exist in the prescribing pattern for thyroid hormone replacement based on non-clinical factors. In a cohort of 1,443 community participants in Baltimore, Mammen et al found that thyroid hormone initiation was more than twice as likely among White (vs Black) patients, and highest among women older than 80 years of age.⁶⁴ Somwaru et al reported similar findings in their population-based longitudinal study of 5,888 individuals aged 65 years and older, with those aged 85 years and older (vs 65–69 years) and White women more likely to be initiated on thyroid hormone replacement.⁶⁵ To understand the clinical significance of disparities in thyroid hormone prescribing, Ettleson et al examined the sociodemographic characteristics between those with untreated and treated hypothyroidism using the National Health and Nutrition Examination Survey (NHANES), a nationally representative dataset with available thyroid function data.⁶⁶ Ettleson et al found that male gender, younger age, and lack of access to routine health care were associated with untreated hypothyroidism.⁶⁶ Furthermore, Hispanic ethnicity was associated with undertreatment of hypothyroidism compared to non-Hispanic White.⁶⁶ More work is needed to understand why this disparity in treatment of hypothyroidism exists (e.g., communication barriers, systemic barriers, etc.) and its downstream implications (e.g., coronary heart disease, heart failure, cognitive dysfunction, and pregnancy related complications in those with untreated and undertreated hypothyroidism).

Strategies to achieve more equitable thyroid care

The causes of disparities in thyroid care are multifactorial and thus, innovative strategies that take an ecological approach to addressing racial disparities are needed to achieve equitable care for all patients with thyroid disease (Table 1). At the individual level, physicians need to have opportunities and protected time to obtain advanced training in thyroid ultrasonography, which is the cornerstone of long-term surveillance for thyroid cancer, and in effectively communicating with limited English proficient patients via trained medical interpreters.^67–70 In addition, the development of easily accessible multilingual and culturally sensitive information support tools and decision aids for thyroid disease will facilitate patients’ understanding and involvement in the treatment decision making.^71,72 At the level of hospitals and healthcare systems, time and resources should be invested to 1) improve healthcare access for patients with limited English proficiency, a vulnerable and important population comprising more than 25 million individuals in the US^73–76; 2) provide opportunities for patients with thyroid cancer to meet with financial counselors given the substantial healthcare costs of thyroid cancer in the US^77–80; and 3) engage with the community to address social and environmental factors that impact the health of community members. In the realm of public policy, there needs to be increased access to high-volume surgeons given findings from multiple studies that have demonstrated an association between higher volume surgeons and improved patient outcomes.^7,8,17–19 To improve access, it is necessary to increase transparency on surgeons’ performance of thyroid surgery (i.e., volume per year and patient outcomes) and develop clinical practice guidelines with parameters on which patients would benefit from referral to a high-volume surgeon for thyroid surgery based on extent of disease. Additionally, the expansion of Medicaid or creation of an alternative mechanism to provide affordable health insurance to uninsured adults living in the US will be essential to improving health care access.^81,82 Furthermore, even after the current coronavirus disease (COVID-19) pandemic ends, continued provider reimbursement for virtual visits, including those conducted by telephone and across state lines, will improve access to thyroid care for vulnerable patient populations living in underserved areas.⁸³ Continued funding for disparities-focused research such as those available through the National Institutes of Health, American Cancer Society, the Association of American Medical Colleges, and the Centers for Medicare and Medicaid Services is also essential to improve our understanding of disparities in thyroid care and provide actionable data that will yield more equitable care for all patients.^84–88

Table 1.

Strategies to address disparities in thyroid care.

	Address systems factors	Address physician factors	Address patient factors
At the level of the individual
Physician training and education on effective use of trained medical interpreters to provide care to limited English proficient patients	X	X	X
Continuing medical education courses in thyroid ultrasonography and effective shared decision making for physicians	X	X	X
Clinical practice guidelines on appropriate thyroid ultrasound use	X	X
Easily accessible information support tools and decision aids for thyroid disease in patients’ preferred language			X
At the level of hospitals and healthcare systems
Financial investment to improve healthcare access for limited English proficient patients (i.e., multilingual hospital signs/information, multilingual patient portal)	X	X	X
Use of non-traditional platforms for virtual visits (e.g., FaceTime, telephone)	X		X
Availability of financial counselors to assist thyroid cancer patients from the time of diagnosis	X		X
Community engagement to better understand and address the social and environmental factors that impact the health of its community members	X		X
Public policy
Funding for disparities-focused research	X	X	X
Resource allocation to increase access to trained medical interpreters for limited English proficient patients, and to high-volume surgeons for all patients	X		X
Reimbursement by insurance companies for virtual visits and for thyroid specialists across state lines	X		X
Expand Medicaid coverage or provide alternative affordable insurance option for uninsured adults	X		X

Summary

Given the high prevalence of thyroid disease in the US and documented worse outcomes for racial and ethnic minorities, the endocrinology community faces an imperative to examine of the factors contributing to such inequities and implement effective strategies to reduce disparities in thyroid care.³ Current population-based data demonstrate that multiple factors contribute to disparities in the process and outcomes of thyroid care. These include socioeconomic status, health insurance status, and differential access to physicians and hospitals capable of providing the highest level of care. Continued funding for disparities-focused research and engagement of major stakeholders in the healthcare system are necessary to improve the health of vulnerable patient populations with thyroid disease. In addition, prioritizing the reduction of racial disparities in public policy and allocating resources to this effort will be essential.

Clinical Care Points.

• Variation exists in the provision of guideline-concordant care for patients with thyroid cancer. Thus, it is important for all members of the thyroid cancer patient’s treatment team to be familiar with and have access to the American Thyroid Association (ATA) and/or the National Comprehensive Cancer Network (NCCN) guidelines on treatment of thyroid cancer.

• Patients with thyroid cancer have significant unmet information needs. Because non-English-speaking patients with thyroid cancer may have greater unmet information needs that may impair shared decision making, physicians should use language interpreters liberally and have culturally and linguistically appropriate patient-centered literature available in various languages.

• To improve thyroid cancer care delivery and quality, clinics should have a list of endocrinologists, surgeons, and ultrasound radiologists on hand for all patients. The list of physicians should be available in several languages and include all the insurances accepted by each practitioner, as well as what languages they speak.

Key Points.

• Disparities exist in the diagnosis and treatment of malignant and benign thyroid disease, with racial and ethnic minorities experiencing worse clinical outcomes.

• Racial and ethnic minorities with thyroid cancer present with more advanced disease and experience more surgical complications, likely a result of care delivered by lower volume surgeons.

• Black patients with Graves’ disease are more likely to receive surgical treatment, and have worse surgical outcomes compared with their White counterparts.

• Ethnic differences exist in the treatment of hypothyroidism, with Hispanic ethnicity associated with undertreatment compared to non-Hispanic Whites.

• Inequities in thyroid care are due to the complex interplay of systems-, physician-, and patient-level factors. Thus, innovative multilevel interventions are necessary to address racial disparities and ultimately to achieve more equitable care for all patients with thyroid disease

Synopsis.

Thyroid disease affects an estimated 20 million Americans, with one in eight women developing a thyroid disorder during her lifetime. Although most patients with thyroid cancer have a good prognosis and effective treatments for benign thyroid disease are available, disparities exist in thyroid care and result in worse outcomes for racial and ethnic minorities. Inequities in the diagnosis and treatment of thyroid disease are due to the complex interplay of systems-, physician-, and patient-level factors. Thus, innovative strategies that take an ecological approach to addressing racial disparities are needed to achieve equitable care for all patients with thyroid disease.