Language and Cultural Concordance to Promote Equity in Organ Transplantation for Hispanics with Limited English Proficiency

Abstract

Purpose of review.

Hispanics with limited English proficiency (LEP) face unique challenges in accessing organ transplantation due to limited culturally-concordant care and linguistically-appropriate resources, leading to disparities in healthcare delivery and transplantation outcomes. This review examines how language barriers affect access to kidney and liver transplantation, and highlights the importance of institutional support for quality interpretation services in promoting healthcare equity in transplantation.

Recent findings.

Hispanics experience greater disease burden, but are less likely to receive a transplant compared to non-Hispanic Whites. LEP is a significant barrier to transplantation. Culturally- and linguistically-concordant interventions, such as the “Hispanic Kidney Transplant Program,” have demonstrated success in improving transplant-related outcomes among Hispanics. However, limited resources affect widespread implementation, and the broad lack of interpretation services in healthcare settings delay timely care in transplantation.

Summary.

Despite some progress demonstrated by culturally- and linguistically-concordant clinical intervention trials, disparities in transplantation for Hispanics with LEP remain. Enhancing the availability of interpretation services, recruiting and hiring bilingual healthcare professionals, and training healthcare staff to effectively engage with language and interpretation resources are critical to improving health equity. Efforts must prioritize language access and cultural concordance to address the unique challenges faced by Hispanics with LEP.

Introduction

Hispanics comprise almost 20% of the United States (US) population,¹ and ~5% of the population are Spanish-speakers with limited English proficiency (LEP).² LEP in the US has been associated with significant language barriers in healthcare settings, which are associated with lower understanding of medical information, absence of informed consent, incorrect diagnoses, and lower patient satisfaction.^3–7 These factors contribute to lower treatment adherence, greater complications, longer hospitalizations, and health disparities.^3–9 Professional interpretation services are associated with improved healthcare quality and reduced costs among patients with LEP,^3,7,10 yet are often underutilized.^3,4,7–9,11 Title VI of the US Civil Rights Act of 1964¹² requires that any federally-funded program or activity take “reasonable steps” to support equitable access to services for patients with LEP (Figure 1), however, patients with LEP face low quality interpretation services, thus risking suboptimal care and adverse events in healthcare settings.^{3,4,7–9,11,13} Such linguistic challenges can be especially harmful in complex medical cases, where accurate information exchange is critical, and the absence of it can exacerbate serious health conditions.

Figure 1.

Four Factor Analysis of Title VI ¹²

Note: These factors outline the extent to which healthcare organizations must provide language services to fulfill the specific needs of the patient population they serve, given their available resources and finances.¹²

Hispanics and Organ Transplantation

Limited literature focuses on Hispanics with LEP in organ transplantation, primarily targeting kidney transplantation,^8,9,14,15 with notably less attention in liver transplantation.^16,17 Studies on other organ transplants involving Hispanics with LEP are particularly scarce, and references cited herein are dated from the 2010s and early 2020s, underscoring the critical need for greater attention in this area.

Kidney Transplantation.

In kidney transplantation, Hispanics with LEP face unique healthcare challenges. Despite being more likely to develop end-stage kidney disease (ESKD), Hispanics are 26% less likely to receive any kidney transplant (KT), 11% less likely to receive a deceased donor KT (DDKT), and 52% less likely to receive a living donor KT (LDKT), compared to non-Hispanic Whites (hereafter, Whites).^18,19 Furthermore, Hispanics with ESKD are more likely to report diabetes and hypertension as underlying conditions compared to their White counterparts, and are less likely to have inpatient and outpatient Medicare coverage at dialysis initiation.²⁰ These circumstances put Hispanic patients with LEP at an even greater disadvantage when navigating the KT process.

A recent review of chronic kidney disease (CKD) and KT among Hispanics showed how lower language acculturation in English was associated with a 30% increase in CKD prevalence among patients 65 years and older,¹⁵ which is problematic because CKD risk progression increases with age. This review also found that Hispanics make up 21% of the United Network for Organ Sharing (UNOS) DDKT waitlist, which places them as the third largest racial and ethnic group behind Whites (47%) and non-Hispanic Blacks (30%) on the waitlist. However, only 19% of Hispanics on any UNOS waitlist received a transplant, compared to 45% of their White counterparts. Further investigation is warranted to clarify what is leading to Hispanics experiencing poor KT access.

Liver Transplantation.

Although the burden of ESKD along with KT racial and ethnic disparities are well-characterized in the literature^5,14,21–23 and in national surveillance databases (i.e., United States Renal Data System),¹⁹ similar disparities may exist in liver transplantation (LT), but the available data are less robust.^16,17 End-stage liver disease (ESLD) lacks a national surveillance dataset, making it difficult to characterize the extent of health disparities across racial and ethnic groups, including those with LEP.¹⁷ Further, Hispanics are underrepresented in clinical trials for chronic liver disease.¹⁶ Yet, data show that Hispanics have double the rate of hepatocellular carcinoma, at 9.74 per 100,000 Hispanics, compared to 4.93 per 100,000 Whites. Hispanic patients with hepatocellular carcinoma are diagnosed at much later stages, limiting their treatment options and eligibility for transplant.¹⁶ Additionally, age-adjusted liver-related mortality is 50% greater among Hispanics than Whites.¹⁶ Despite these risks, Hispanics are underrepresented on LT waiting lists compared to Whites. This disparity increased during the COVID-19 pandemic.¹⁶ One study estimated that Hispanics are 23% more likely to die while on the LT waitlist compared to White patients.²⁴ However, Hispanics are 21–54% more likely to be waitlisted for LT in states that expanded Medicaid coverage following implementation of the Affordable Care Act,¹⁷ demonstrating that systemic barriers and healthcare policies play a pivotal role in Hispanics’ access to transplantation.

Although empirical evidence for disparities in LT is less comprehensive than for KT, systematic reviews show support that Hispanics with LEP are likely to face similar disadvantages in accessing LT-related care,^16,17 as they do in KT. The recurring issues of health inequities among Hispanics,^15,19 including language barriers and minimal culturally-relevant communication strategies,^{5,14,21,25,26} contribute to disparities across both KT and LT processes. Thus, these disparities call for closer examination of single-center studies to better understand the burden of health inequities in KT and LT faced by Hispanics with LEP.

Single-center studies in KT and LT.

Recent studies provide additional insights into how transplant-related outcomes may differ for these populations. In one US pediatric KT sample where 24.3% of the LEP patients were Hispanic, requiring a language interpreter (n=37) was significantly associated with older age at transplantation, longer time between ESKD diagnosis and KT, and a higher likelihood of DDKT over LDKT, when compared to English-speaking patients (n=211).¹³ Another study in Boston, MA analyzed whether the COVID-19 vaccine roll-out was equitable among KT and LT patients (n=3001), and determined that non-White race and LEP status were related to vaccination delays compared to White race and English-proficiency status.²⁷ Hispanics made up 60% of their 193 patients with LEP, but only 3.8% (n=115) of their total sample.²⁷ Among 1723 patients with alcohol-associated hepatitis at Mass General Brigham, English-proficiency was associated with 3.20 times greater odds of undergoing LT evaluation compared to LEP status. However, only 200 (12%) patients in the sample had LEP, and only 38 (2%) Hispanics were represented in the sample, with half (19; 1%) preferring a language other than English.²⁸ Although these studies provide insight into associations between Hispanics, LEP status, and transplant outcomes, their findings are considerably limited by the small number of Hispanic patients (2.2–4.0%) and patients with LEP (6.4–14.9%) represented in their samples.^13,27,28 These small sample sizes reflect disparities in research participation, and (potentially) referral to specialty clinics among Hispanics with LEP.

Language Resources for LEP Transplant Patients

There is a significant lack of non-English language resources available through transplant center websites.^25,26 Among 227 KT websites in the US, only 38 (17%) provided resources in a non-English language, and most websites were written at a relatively high reading level.²⁵ Among 140 websites of active LT centers in the US, only 34 (24.3% of centers) offered information in a non-English language, with Spanish being the most commonly provided language.²⁶ Notably, 23 states did not have a LT center that offered any online materials in a non-English language, and only 31% of LT centers (in 16 US states) were affiliated with larger centers that offered online resources in a non-English language.²⁶ In all organ transplant contexts, it is critical to use Spanish medical interpreters, Spanish-speaking healthcare professionals, and offer language concordance when providing important transplant-related information, to promote health equity among Hispanics with LEP.^15–17 The overall lack of materials and resources available in a non-English language likely exacerbate ongoing disparities that Hispanics with LEP face, thus widening the gap in obtaining accessible care in transplantation.

Hispanic Kidney Transplant Programs

Systemic shortcomings such as lack of language resources and inadequate interpretation services in healthcare settings can explain why Hispanic patients with LEP face inequities in transplant. When patients have access to qualified interpreters, or ideally, to physicians and healthcare staff who speak their dominant language, satisfaction and health-related outcomes improve.^8,9 Some transplant centers developed healthcare system-level interventions to address the needs of Hispanic transplant patients. Despite being limited to kidney transplant patients, these programs provide an important step to empirically testing language- and culturally-concordant interventions for Hispanic transplant patients.

A group at Northwestern Medicine developed the Hispanic Kidney Transplant Program (HKTP) to target this systemic issue. This culturally-concordant clinic-level intervention that launched in December 2006 prioritized the hiring of bilingual and bicultural healthcare professionals and staff, produced all written materials in Spanish, and actively involved family members of Hispanic KT candidates during education sessions. Their goal was to reduce transplant-related disparities among Hispanics, and to improve Hispanic patients’ access to LDKT.⁵ In the years following implementation of the HKTP, the team observed a 74% increase in LDKT among Hispanics at their center compared to before implementation. Additionally, the number of Hispanics from their center added to the KT waitlist increased by 91% during this time. Notably, during this same timeframe, the number of Hispanics receiving LDKT from UNOS Region 7 (excluding Northwestern Medicine) decreased.⁵

In a follow-up study, Northwestern Medicine tested their HKTP at two additional transplant clinics—one in a southern US state (Site A) and another in a southwestern US state (Site B)—and compared outcomes to two control clinics in the same regions (Site C and D, respectively).⁶ Hispanics at Site A were more than 3 times more likely to receive an LDKT post-HKTP (OR = 3.17; 95% CI: 1.04, 9.63), whereas no increase was observed among Whites, suggesting a reduction in LDKT disparities. Conversely, at Site C, Whites received more LDKTs post-HKTP, but rates for Hispanics remained unchanged. At Site B, there were no statistically significant increases in Hispanic LDKT rates post-HKTP, despite a significant increase observed for Whites, and they did not meaningfully differ in the rate of LDKTs among Hispanics compared to Site D.⁶ Overall, Site A better adhered to HKTP-implementation than Site B. Higher fidelity to implementation may partially explain Site A’s observed success, but Site A also started with a lower number of Hispanic LDKTs, thus creating more room for improvement. In contrast, Site B was able to get more patients off the waitlist by offering more DDKTs.⁶

Although implementing HKTPs and similar clinic models have been successful,^5,6,29,30 and post-implementation qualitative data showed that using Spanish as the primary language during clinic appointments enhanced patients’ understanding of KT,^9,29 there are limitations. For example, a successful HKTP program at the University of Colorado showed significant increases in patients referred for transplant (79.4%, p=.008) and completing evaluation for transplant (82.4%, p=.02), among 436 Spanish-speaking patients.²⁹ However, the 13.5% increase in the number of patients waitlisted was non-significant, possibly due to the COVID-19 pandemic. Still, this study is unique in that it exclusively reported on Hispanic KT candidates who primarily speak Spanish, an understudied topic.²⁹ In contrast, the Northwestern group did not examine outcomes based on patients’ LEP status, despite 28–43% of intervention participants in their hybrid trial preferring English, making it difficult to evaluate the intervention’s impact on this particular population.⁶ Similarly, a year after a North Carolina transplant center implemented their “Latino Clinic,” they found increases among Hispanics in KT referrals, KT waitlisting, and KTs compared to the year prior. Yet they provided minimal data on their complete patient population during this period, including the number of Hispanics in their clinic, making it difficult to draw definitive conclusions on its successes. Additionally, they did not report on patients with LEP, making it impossible to evaluate progress in this area.³⁰ A summary of original research can be found in Table 1.

Table 1.

Summary of published reports of outcomes relevant to LEP populations in kidney and liver transplantation

Study	Data collection period	Location	Design	Sample	Sample with Hispanics	Sample with Hispanics with LEP	Outcome
Cloonan et al 2023	January 1, 2016 to July 31, 2021	Massachusetts General Brigham	Retrospective	1723 patients with alcohol-associated hepatitis	38 (2.2%)	19 (1.2%)	In an adjusted model, patients with English-proficiency had over 3 times greater odds of being evaluated for LT.
de Crescenzo et al 2023 a	December 18, 2020 to February 15, 2021	Boston, MA	Retrospective	3001 abdominal transplant recipients (kidney, liver, or both)	115 (3.8%)	Not reported	Preferring a language other than English was independently associated with delays in receiving the COVID-10 vaccination.
Gordon et al 2015 b, c	2001–2006 and 2008–2013	Northwestern Medicine	Prospective cohort compared to historical controls	1286 living donor KT recipients	274 (21.3%)	Not reported	Implementation of the HKTP was associated with a 74% increase in living donor KTs at follow-up.
Gordon et al 2022 c	January 1, 2011 to March 15, 2020	South and Southwestern US	Comparative hybrid trial	2063 KT recipients	937 (45.4%)	66–72% at intervention sites (n=1020)	Greater LDKT rates were observed among Hispanics at the site that better adhered to HKTP implementation.
Jacobson et al 2022	December 2020	US	Systematic cross-sectional review	140 active transplant center websites	N/A	N/A	Only 34 websites (24.3%) provided resources in any non-English language.
Kerkvliet et al 2023	January 2005 to August 2019	Single pediatric transplant center in US	Retrospective	248 pediatric KT recipients	10 (4.0%)	9 (3.6%)	Patients needing interpreters experienced longer wait times to KT, greater prevalence of deceased donor KT over living donor KT, and older age at KT.
Olmeda Barrientos et al 2021	July 2020	US	Systematic cross-sectional review	227 KT center websites	N/A	N/A	Only 17% (n=38) of any KT center website provided resources in any non-English language.
Pande et al 2022	January 1, 2015 to December 31, 2017 and January 1, 2018 to December 31, 2020	University of Colorado	Retrospective matching with historical controls	436 KT candidates	436 (100%)	436 (100%)	Implementation of the HKTP was statistically associated with increases in patients referred for KT, evaluated for KT, and presented for committee review compared to pre-HKTP. Non-significant increases in number of patients waitlisted for KT were observed.
Serrano Rodriguez et al 2021 d	2018–2019	Transplant clinic in North Carolina	Retrospective	Not reported	Not reported	Not reported	One year after implementing their Latino Clinic, the authors report a 125% increase in KT referrals (from 28 in 2018 to 63 in 2019), a 142% increase in Latinos waitlisted for KT (from 12 in 2018 to 29 in 2019), and an increase in KT among Latino patients (from 11 in 2018 to 27 in 2019).

^ade Crescenzo et al 2023 report that 193 participants in the sample spoke a language other than English, and that 60% of those patients spoke Spanish, but do not report the exact frequency number.

^bGordon et al 2015 does not report the number of Hispanic patients with LEP in their pre- and post-intervention sample.

^cGordon et al (2015, 2022) report an analysis with the intervention cohorts and the UNOS/OPTN waitlist during the same timeframe as the data collection period, but this table does not report those findings.

^dSerrano Rodriguez et al 2021 provides incomplete data.

In sum, current research on implementing culturally-concordant transplant programs demonstrates that more progress is necessary to improve health equity among Hispanics, and those with LEP. Approximately 85% of all LDKTs in the US are performed at just 10 transplant centers, half of which offer patient-physician language concordance in Spanish.⁹ We must strive to develop and improve evidence-based strategies to achieve equity in transplantation, and capitalize on available resources by enhancing training and support despite existing limitations.

Clinical recommendations

Efforts to achieve greater equity in transplantation among Hispanics with LEP must prioritize language- and cultural-concordance between healthcare professionals, staff, and patients as demonstrated by the success of HKTPs;^5,6,29,30 however, these programs can be cost- and resource-prohibitive. Clinics that can hire bilingual healthcare professionals and staff have a responsibility to do so, and per the four factor analysis outlined in Title VI,¹² must hire highly qualified professional interpreters. Bilingual healthcare professionals and staff should be informed if interpreting will be part of their job, and be offered adequate training to ensure they are providing interpretation services in a manner that is consistent with professional standards. Continuous requests for bilingual physicians and staff to serve as interpreters must be followed by a clear change in their job scope and subsequent training. Clinics should avoid situations in which bilingual physicians and staff are forced to interpret while simultaneously fulfilling their primary duties,^31–33 because carrying out dual roles can lead to errors.^33,34 Medical interpretation involves a specific skillset, and someone who is bilingual does not necessarily have the skills required for this profession.^33,34 Therefore, hiring high-quality interpreters within healthcare clinics should always be included in their budgets, especially in areas that serve a high volume of patients with LEP.¹² Monolingual healthcare professionals and staff should be trained to work effectively with professional interpreters,^10,33,35 and, given the general lack of quality interpretation services,^{3,4,7,31–34} this training should be extended to working with Artificial Intelligence interpretation/translation technology, telephonic interpreters, and ad hoc (i.e., non-professional) interpreters. Although not considered the gold standard, family members serving as ad hoc interpreters may occur;^{3,4,7,10,33,36,37} therefore, resource-limited transplant centers should focus on optimizing and training healthcare professionals and staff to effectively work with family members to alleviate some of the burden on them. Although family members may be willing to serve as interpreters out of obligation, duty, and/or respect for their loved ones,^36,37 ideally, they should have the flexibility to focus on providing emotional and instrumental support in healthcare settings without being preoccupied by interpreting. However, an important reminder is that optimizing training to work effectively with ad hoc interpreters should not replace working with professional interpreters if resources allow for it.

Conclusions

This review underscores the importance of language accessibility and equity among Hispanics with LEP within a transplantation context. Research on Hispanics with LEP in organ transplantation is limited, with most studies focused on KT,^8,9,14,15 and fewer addressing LT.^16,17 Hispanics disproportionately encounter barriers to KT, including greater disease burden when referred to transplantation, lower likelihood of receiving a transplant, and lower likelihood of receiving a LDKT compared with their White counterparts.^14–17,19 These outcomes are likely exacerbated by language barriers, and lack of Medicare coverage leading up to the need for KT.^14,15,19 Similar patterns exist in LT, such that Hispanics are underrepresented on the LT waitlist and experience greater liver disease burden, though data on the full extent of these disparities remain limited.^16,17 Programs like HKTPs that offer culturally- and linguistically-concordant care have shown great promise in improving access to LDKT and increasing waitlist referrals for Hispanic patients.^5,6,9,29,30 Further evaluation is needed regarding how LEP status affects transplant outcomes.^6,29,30 Transplant clinics and referring providers must expand access to professional interpretation services and non-English language resources. Hispanic patients cannot receive transplants if they are never referred for transplant, and LEP status can directly lead to significant delays in preventive care and diagnosis,^3–9 blocking these referrals. Ultimately, advancing health equity in transplantation among Hispanics requires intentional prioritization on improving language access in all healthcare settings.

Key points.

• There is a paucity of literature on Hispanics with limited English proficiency (LEP) in organ transplantation, with most research focusing on kidney transplant (KT), notably less attention in liver transplant (LT), and none in other organ transplant populations.

• Hispanics with LEP face greater barriers to KT, including higher disease burden at KT referral, lower KT rates, and reduced likelihood of living donor KT (LDKT).

• Similar disparities are observed in LT, where Hispanics are underrepresented on the waitlist, and experience greater liver disease burden; however, data is limited.

• Culturally- and linguistically-concordant programs, like the Hispanic Kidney Transplant Program, have increased KT referrals and improved access to LDKT among Hispanic patients.

• Improving access to professional interpretation services and language resources is essential to reduce delays in care and ensure equitable transplant outcomes for Hispanic patients with LEP.