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Undocumented people in the United States face innumerable legal and structural barriers to health and health care services, including for kidney failure. Their experiences vary across states and regions due to wide variation in insurance coverage and unreliable access to health-promoting resources, including medical-legal partnerships. This commentary on a case canvasses key policy about structural and legal determinants of health for undocumented persons.
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Accesibilidad a los Servicios de Salud , Abogados , Humanos , Estados Unidos , Accesibilidad a los Servicios de Salud/ética , Inmigrantes Indocumentados , Cobertura del Seguro , Necesidades y Demandas de Servicios de Salud , Médicos/éticaRESUMEN
Context: The rise in continuous glucose monitor (CGM) use has been characterized by widening disparities between the least and most socially marginalized. Given access barriers, there is limited CGM patient experience information that is inclusive of those with type 2 diabetes mellitus from socially marginalized backgrounds. Objective: To understand the CGM usage experience in the primary care setting across a US Medicaid population with type 2 diabetes at federally qualified health centers. Methods: This qualitative study used semi-structured phone interviews with 28 English- or Spanish-speaking participants prescribed the CGM who were enrolled in a US Medicaid program that subsidized CGMs. Audio recordings of interviews were transcribed and analyzed by reflective thematic analysis. Results: Twenty-eight participants (75% female, median age 56 years with interquartile-range 48-60 years) were interviewed. Participants were from different racial/ethnic backgrounds: 21% non-Hispanic White, 57% Hispanic, and 18% non-Hispanic Black. Participants primarily spoke English (68%) or Spanish (32%), and 53% reported 9 or fewer years of formal education. We identified 6 major themes: initial expectations and overcoming initiation barriers, convenience and ease promote daily use, increased knowledge leads to improved self-management, collaboration with provider and clinical team, improved self-reported outcomes, and barriers and burdens are generally tolerated. Conclusion: CGM use was experienced as easy to understand and viewed as a tool for diabetes self-efficacy. Expanded CGM access for socially marginalized patients with type 2 diabetes can enhance diabetes self-management to help mitigate diabetes outcome disparities.
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PURPOSE OF REVIEW: Inequities in kidney disease are a result of differences in healthcare access and inequitable structural policies that lead to downstream social challenges. An individual with kidney disease sits at the intersection of a variety of governmental and institutional policies that directly affect their access to kidney healthcare and different care delivery models. However, their voice in policy change is often neglected by stakeholders with more structural power. Marginalized individuals with kidney disease are disproportionately affected by kidney disease and inequitable policies can further these health disparities. The review aims to describe how marginalized individuals can be centered in research and lead in advocacy efforts to promote equitable policy change. RECENT FINDINGS: The marginalized patient voice is critical in advocacy to promote equitable policy change. We discuss examples illustrating research and advocacy methods which center and partner with marginalized communities to catalyze effective policy interventions. SUMMARY: Centralizing the patient voice when engaging in advocacy can identify and contextualize the effects of inequitable public policy and improve advocacy efforts.
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Individuals living with CKD are disproportionately burdened by a multitude of adverse clinical and person-centered outcomes. When patients transition from advanced kidney disease to kidney failure, the psychosocial effects as well as social determinants of health challenges are magnified, making this a particularly difficult time for patients beginning kidney replacement therapy. The key social determinants of health challenges often include food and housing insecurity, poverty, unreliable transportation, low level education and/or health literacy, lack of language interpreters and culturally concordant educational materials, lack of health care insurance coverage, and mistrust of the health care system. Psychosocial and physical stressors, such as depression, anxiety, sexual dysfunction, sleep difficulty, fatigue, and pain, are often part of the illness burden among individuals living with CKD and can interact synergistically with the social challenges making the transition to kidney replacement therapy particularly challenging. To better support patients during this time, it is critical that social and structural determinants of health as well as mental health be assessed and if needs are identified, that services be provided.
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Salud Mental , Insuficiencia Renal Crónica , Humanos , Atención a la Salud , Pobreza , RiñónRESUMEN
Importance: Individuals of undocumented immigration status with kidney failure face barriers to receiving transplants due to lack of health insurance despite no regulatory barriers. Little is known about the perspectives on kidney transplant among individuals with undocumented immigration status with kidney failure who relied on emergency hemodialysis. Objective: To examine the overall experiences of transplant among transplant recipients of undocumented immigration status who previously relied on emergency hemodialysis and their family caregivers. Design, Setting, and Participants: In this qualitative study, semistructured 1-to-1 interviews were conducted with transplant recipients who had previously received emergency hemodialysis and transitioned to scheduled dialysis and their primary caregivers living in Denver, Colorado, between May 1, 2022, and March 31, 2023, in English or Spanish. Main Outcomes and Measures: Themes and subthemes regarding the experience of transplant as an undocumented immigrant previously receiving emergency hemodialysis were identified. Interview transcripts were translated, deidentified, and then analyzed using thematic analysis. Results: A total of 25 participants including 15 transplant recipients (5 [33.3%] female and 10 [66.7%] male; mean [SD] age, 49.5 [9.8] years) and 10 caregivers (7 [70.0%] female and 3 [30.0%] male; mean [SD] age, 44.5 [22.3] years) participated. Six themes were reported: limited kidney replacement therapy education while receiving emergency hemodialysis (lack of awareness of kidney disease and treatment options and discriminatory kidney replacement therapy education due to immigration status), hope for transplant once receiving scheduled dialysis (prospect of transplant through scheduled dialysis, family and quality of life as transplant motivators), transplant education and health insurance after transition to scheduled dialysis (inadequate transplant education in dialysis clinic, peer-to-peer transplant education, and peer-to-peer communication regarding availability of private health insurance), uncertainty during transplant evaluation (difficulty navigating the evaluation and wait-listing process, lack of communication regarding timeline, and concern for family limiting living donation), posttransplant improvements (ability to work after transplant is critically important given immigration status, autonomy with transplant improves mental health, and vigilance in maintaining transplant), and transplant facilitators (self-advocacy, spirituality and optimism, and peer support). Conclusions and Relevance: This qualitative study of transplant recipients of undocumented immigration status and their caregivers found that individuals formerly receiving emergency dialysis are excluded from education and access to transplant, and peer support throughout the transplant process helped with education and motivation to pursue transplant. These findings may be used to implement improvements in access to support and education for patients of undocumented immigration status with kidney failure, especially in areas where scheduled dialysis is not available.
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Insuficiencia Renal , Inmigrantes Indocumentados , Humanos , Femenino , Masculino , Persona de Mediana Edad , Adulto , Cuidadores , Diálisis Renal , Calidad de VidaRESUMEN
SIGNIFICANCE STATEMENT: Hispanic patients are known to have a higher risk of kidney failure and lower rates of home dialysis use and kidney transplantation than non-Hispanic White patients. However, it is unknown whether these outcomes differ within the Hispanic community, which is heterogeneous in its members' places of origins. Using United States Renal Data System data, the authors found similar adjusted rates of home dialysis use for patients originating from places outside the United States and US-born Hispanic patients, whereas the adjusted risk of mortality and likelihood of transplantation differed depending on place (country or territory) of origin. Understanding the heterogeneity in kidney disease outcomes and treatment within the Hispanic community is crucial in designing interventions and implementation strategies to ensure that Hispanic individuals with kidney failure have equitable access to care. BACKGROUND: Compared with non-Hispanic White groups, Hispanic individuals have a higher risk of kidney failure yet lower rates of living donor transplantation and home dialysis. However, how home dialysis, mortality, and transplantation vary within the Hispanic community depending on patients' place of origin is unclear. METHODS: We identified adult Hispanic patients from the United States Renal Data System who initiated dialysis in 2009-2017. Primary exposure was country or territory of origin (the United States, Mexico, US-Puerto Rico, and other countries). We used logistic regression to estimate differences in odds of initiating home dialysis and competing risk models to estimate subdistribution hazard ratios (SHR) of mortality and kidney transplantation. RESULTS: Of 137,039 patients, 44.4% were US-born, 30.9% were from Mexico, 12.9% were from US-Puerto Rico, and 11.8% were from other countries. Home dialysis rates were higher among US-born patients, but not significantly different after adjusting for demographic, medical, socioeconomic, and facility-level factors. Adjusted mortality risk was higher for individuals from US-Puerto Rico (SHR, 1.04; 95% confidence interval [CI], 1.01 to 1.08) and lower for Mexico (SHR, 0.80; 95% CI, 0.78 to 0.81) and other countries (SHR, 0.83; 95% CI, 0.81 to 0.86) compared with US-born patients. The adjusted rate of transplantation for Mexican or US-Puerto Rican patients was similar to that of US-born patients but higher for those from other countries (SHR, 1.22; 95% CI, 1.15 to 1.30). CONCLUSIONS: Hispanic people from different places of origin have similar adjusted rates of home dialysis but different adjusted rates of mortality and kidney transplantation. Further research is needed to understand the mechanisms underlying these observed differences in outcomes.
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Hispánicos o Latinos , Trasplante de Riñón , Diálisis Renal , Insuficiencia Renal , Adulto , Humanos , Insuficiencia Renal/mortalidad , Estudios Retrospectivos , Factores de Riesgo , Estados Unidos/epidemiología , Resultado del Tratamiento , Geografía Médica , Trasplante de Riñón/estadística & datos numéricos , Disparidades en el Estado de SaludRESUMEN
ABSTRACT: Latinx populations face a higher burden of kidney failure and associated negative outcomes compared with non-Latinx White populations, despite sharing a similar prevalence of CKD. Community health worker (CHW) interventions have been shown to improve outcomes for Latinx individuals, but they are largely underutilized in kidney disease. We convened a workshop of four ongoing kidney disease CHW programs to identify successes, challenges, potential solutions, and needed research to promote CHW programs for Latinx individuals with kidney disease. Key points from the workshop and recommendations for intervention and research are highlighted. Facilitators of program success included prioritizing trust-building with participants, enabling participants to determine what aspects of the intervention were needed, providing participants with tools to help themselves and others after the intervention, and taking a trauma-informed approach to relationships. Challenges included persistent systemic barriers despite successful care navigation and low recruitment and retention. Research is needed to capture the effect of CHW interventions on outcomes and to determine how to implement CHW interventions for people with kidney disease nationwide.
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Enfermedades Renales , Nefrología , Humanos , Agentes Comunitarios de Salud , Enfermedades Renales/terapiaRESUMEN
PURPOSE OF REVIEW: To review the current literature on care of hypertension and chronic kidney disease for people who are currently and formerly incarcerated, and to make recommendations for improving outcomes. RECENT FINDINGS: There is a growing body of literature describing care for kidney disease and hypertension for incarcerated and formerly incarcerated individuals that documents the provision of care itself, notably that many jails contract with private companies; the system is not designed to provide sustained, chronic disease care; and the transition from incarceration to community is fraught with gaps in care. However, deficiencies in data collection and regulation still limit our understanding of the quality of care provided in jails and prisons. Furthermore, more data is needed to understand the impact of structural racism in the criminal legal system on overall disparities in care for hypertension and kidney disease. Insurance coverage rates for people who were formerly incarcerated continue to be lower than the general population despite Medicaid expansion in many states. There is little recent data regarding kidney replacement therapy for this population despite known variation in dialysis modalities and transplant programs by state. Transitions clinics, which connect people who were formerly incarcerated with care in the community upon release, are growing and are important avenues by which to deliver care. People who are incarcerated are disproportionately affected by hypertension and kidney disease, yet data regarding the extent of these inequities and availability of quality care is lacking. More work is needed to understand the care of individuals with kidney disease and hypertension in prisons and to improve outcomes for these common chronic conditions. Both providing effective treatment of kidney disease and hypertension in prisons and jails and providing coordinated, quality transition to community care upon release represents an important opportunity for reform in care for a marginalized population.
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Hipertensión , Enfermedades Renales , Prisioneros , Estados Unidos , Humanos , Hipertensión/terapia , Prisiones , Cobertura del SeguroRESUMEN
Importance: Latinx people have a high burden of kidney disease but are less likely to receive home dialysis compared to non-Latinx White people. The disparity in home dialysis therapy has not been completely explained by demographic, medical, or social factors. Objective: To understand the barriers and facilitators to home dialysis therapy experienced by Latinx individuals with kidney failure receiving home dialysis. Design, Setting, and Participants: This qualitative study used semistructured interviews with Latinx adults with kidney failure receiving home dialysis therapy in Denver, Colorado, and Houston, Texas, between November 2021 and March 2023. Patients were recruited from home dialysis clinics affiliated with academic medical centers. Of 39 individuals approached, 27 were included in the study. Interviews were audio-recorded, transcribed verbatim, and analyzed using thematic analysis. Main Outcomes and Measures: Themes and subthemes regarding barriers and facilitators to home dialysis therapy. Results: A total of 27 Latinx adults (17 [63%] female and 10 [37%] male) with kidney failure who were receiving home dialysis participated. Themes and subthemes were identified, 3 related to challenges with home dialysis and 2 related to facilitators. Challenges to home dialysis included misinformation and immigration-related barriers to care (including cultural stigma of dialysis, misinformation regarding chronic disease care, and lack of health insurance due to immigration status), limited dialysis education (including lack of predialysis care, no-nephrologist education, and shared decision-making), and maintenance of home dialysis (including equipment issues, lifestyle restrictions, and anxiety about complications). Facilitators to home dialysis included improved lifestyle (including convenience, autonomy, physical symptoms, and dietary flexibility) and support (including family involvement, relationships with staff, self-efficacy, and language concordance). Conclusions and Relevance: Latinx participants in this study who were receiving home dialysis received misinformation and limited education regarding home dialysis, yet were engaged in self-advocacy and reported strong family and clinic support. These findings may inform new strategies aimed at improving access to home dialysis education and uptake for Latinx individuals with kidney disease.
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Enfermedades Renales , Fallo Renal Crónico , Insuficiencia Renal , Adulto , Humanos , Masculino , Femenino , Hemodiálisis en el Domicilio , Diálisis Renal , Fallo Renal Crónico/terapiaRESUMEN
Rationale and Objective: Latinx individuals are at a higher risk for kidney failure than non-Latinx White individuals; however, they are less likely to receive pre-kidney failure medical care. The objective of this study was to determine the feasibility and acceptability of a community health worker (CHW) intervention that facilitated access to medical care for Latinx individuals. Study Design: Single-arm prospective study. Setting and Participants: Latinx adults were found to have albuminuria or risk factors for kidney disease at community screening events in Austin, Texas. Intervention: A 6-month CHW intervention that facilitated the following: (1) obtaining medical insurance; (2) medical care coordination with primary and nephrology care; (3) kidney disease education; and (4) connection with local resources to address health-related social needs. Outcomes: Recruitment, retention, medical care linkage, and participant and CHW-reported satisfaction with the intervention. Results: Of the 173 individuals who attended the 2 community screening events, 49 agreed to participate in the study, of whom, 51% were men with a mean ± standard deviation (SD) age of 45 ± 14 years, and all self-identified as Mexican or Chicano. The mean ± SD estimated glomerular filtration rate (eGFR) was 110 ± 21 mL/min/1.73 m2 and 41% of the participants reported a urine albumin-creatinine ratio of ≥30 mg/g. Among those enrolled, 28 of the 49 (57%) completed at least 1 CHW visit, and 20 of 49 (41%) completed the intervention. 7 individuals who needed assistance with insurance obtained insurance, and 15 of 20 (75%) scheduled an appointment with a primary care physician within 180 days. Participants reported that the US health care previously seemed inaccessible but gained insurance, the ability to navigate the system, and the ability to help others in their community to access medical care because of the program. Limitations: Small sample size and a single community may limit generalizability. Conclusions: We reported the acceptability of a CHW intervention. We encountered challenges with feasibility and identified strategies to overcome them. Studies are needed to test the effect of CHW interventions on outcomes and kidney health disparities. Funding: National Kidney Foundation young investigator research grant to Dr Novick. Plain Language Summary: Latinx individuals are at a higher risk for kidney failure than non-Latinx White individuals; however, they are less likely to receive pre-kidney failure medical care. We piloted a community health worker intervention that connected people with risk factors or showed evidence of kidney dysfunction at community screening events with medical care. Our findings indicate the acceptability of the intervention. We encountered challenges with feasibility and identified strategies to overcome them.
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Importance: Most undocumented immigrants with kidney failure rely on emergency dialysis (defined as dialysis after a patient presents as critically ill) and experience significant depression and anxiety and high mortality. Culturally and language-concordant peer support group interventions may be associated with reduced depression and anxiety and may provide emotional support. Objective: To investigate the feasibility and acceptability of a single-group peer support group intervention. Design, setting, and participants: This qualitative and single-group prospective study for undocumented immigrants with kidney failure receiving emergency dialysis was conducted in Denver, Colorado, from December 2017 to July 2018. The 6-month intervention included peer support group meetings in the hospital while participants were hospitalized for emergency dialysis. Data were analyzed from March to June 2022. Main outcomes and measures: To assess feasibility, the recruitment, retention, implementation, and delivery for the intervention were tracked. To measure acceptability, interviews were conducted with participants using a structured format. To assess the value of the peer support group intervention, themes and subthemes were identified from interviews with participants and group meetings. Results: Of 27 undocumented immigrants with kidney failure receiving emergency dialysis, 23 participants (9 females [39.1%] and 14 males [60.9%]; mean [SD] age, 47 [8] years) agreed to participate (recruitment rate, 85.2%). Among them, 5 individuals withdrew and did not attend meetings and 18 participants (retention rate, 78.3%) attended a mean of 6 of 12 meetings (50.0%). From interviews and meetings, 3 themes, with associated subthemes, were identified: camaraderie and emotional support from peers (subthemes: peer support is vital for people newly diagnosed with kidney failure, safe space to build relationships and share hardship with peers, hospital setting for peer support is ideal, solidarity to survive and change policy, and sustainability of the peer support group), solutions to improve care and resilience (subthemes: self-advocacy, self-motivation and optimism, kidney disease education, emotional support from peers caregivers, and faith), and emotional and physical aspects of receiving emergency dialysis (subthemes: psychosocial and physical distress, mixed experiences with language-concordant care, emotional exhaustion from end-of-life conversations, and gratitude for clinicians). Conclusions and relevance: This study found that peer support group intervention achieved feasibility and acceptability. The findings suggest that a peer support group may be a patient-centered strategy to build camaraderie and provide emotional support in kidney failure, especially for socially marginalized uninsured populations who report limited English proficiency.
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Insuficiencia Renal , Inmigrantes Indocumentados , Femenino , Humanos , Masculino , Persona de Mediana Edad , Hispánicos o Latinos , Estudios Prospectivos , Diálisis Renal , Grupos de Autoayuda , AdultoRESUMEN
OBJECTIVE: To describe the experiences of nephrologists on caring for patients undergoing in-centre haemodialysis during the COVID-19 pandemic in Latin America. DESIGN: Twenty-five semistructured interviews were conducted by Zoom videoconference in English and Spanish languages during 2020 until data saturation. Using thematic analysis, we conducted line-by-line coding to inductively identify themes. SETTING: 25 centres across nine countries in Latin America. PARTICIPANTS: Nephrologists (17 male and 8 female) were purposively sampled to include diverse demographic characteristics and clinical experience. RESULTS: We identified five themes: shock and immediate mobilisation for preparedness (overwhelmed and distressed, expanding responsibilities to manage COVID-19 infection and united for workforce resilience); personal vulnerability (being infected with COVID-19 and fear of transmitting COVID-19 to family); infrastructural susceptibility of dialysis units (lacking resources and facilities for quarantine, struggling to prevent cross-contamination, and depletion of personal protective equipment and cleaning supplies); helplessness and moral distress (being forced to ration life-sustaining equipment and care, being concerned about delayed and shortened dialysis sessions, patient hesitancy to attend to dialysis sessions, being grieved by socioeconomic disparities, deterioration of patients with COVID-19, harms of isolation and inability to provide kidney replacement therapy); and fostering innovative delivery of care (expanding use of telehealth, increasing uptake of PD and shifting focus on preventing syndemics). CONCLUSION: Nephrologists felt personally and professionally vulnerable and reported feeling helpless and morally distressed because they doubted their capacity to provide safe care for patients undergoing dialysis. Better availability and mobilisation of resources and capacities to adapt models of care, including telehealth and home-based dialysis, are urgently needed.
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COVID-19 , Diálisis Renal , Humanos , Masculino , Femenino , Nefrólogos , América Latina/epidemiología , Pandemias , COVID-19/terapia , Investigación Cualitativa , Atención al PacienteRESUMEN
BACKGROUND: Latinx individuals are disproportionally burdened by kidney diseases compared to non-Latinx White individuals and are underrepresented in kidney-related research. We aimed to describe stakeholder perspectives on Latinx patient engagement in kidney-related research. METHODS: We conducted a thematic analysis of two online moderated discussions and an interactive online survey with open-text responses involving participants (i.e. stakeholders), with personal and/or professional experiences with Latinx patients with kidney diseases and their families/caregivers. RESULTS: Among the eight stakeholders (Female:75%; Latinx ethnicity:88%), there were three physicians, one nurse, one patient with kidney disease who received a kidney transplant, one policy maker, one Doctor of Philosophy, and one executive director of a non-profit health organization. We identified five themes. The majority of themes and their respective subthemes (in parentheses) reflected barriers to engagement: Lack of personal relevance (unable to relate to research staff and marketing resources, and unclear benefit of research to self, family, and community); fear and vulnerability (immigration concerns, stigma with seeking care, skepticism of Western medicine); logistical and financial barriers (limited opportunities to enroll in clinical trials, out-of-pocket costs, transportation issues); and distrust and asymmetry of power (related to limited English proficiency or health literacy, and provider bias). The last theme centered on stimulating interest and establishing trust in the research process. CONCLUSIONS: To overcome barriers to engagement in kidney-related research and establish trust among potential Latinx research participants, stakeholders recommended employing cultural responsiveness and community-based strategies. These strategies can help identify local health priorities, enhance research recruitment and retention strategies, and establish partnerships that continue to elevate research endeavors aiming to enhance the health of Latinx individuals with kidney diseases.
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Alfabetización en Salud , Enfermedades Renales , Humanos , Femenino , Participación del Paciente , Cuidadores , Riñón , Investigación CualitativaRESUMEN
Latinx (includes Hispanics and is the non-gendered term for Latino/Latina which is a person of Latin American origin or descent) constitutes the largest racial and ethnic minority group in the United States (US). Many members of this group report limited English proficiency, experience discrimination, feel distrust in the healthcare setting, and face poorer health outcomes than non-Latinx Whites. As healthcare systems assess internal structures of care, understanding the experiences of Latinx patients may inform strategies to improve care. This narrative review describes studies that assessed the experiences of Latinx patients with limited English proficiency (LEP) in the inpatient and outpatient settings in the US. We searched PubMed for studies published between January 1, 1990, and March 2021. We reviewed all citations and available abstracts (n = 429). We classified study titles (n = 156) as warranting detailed consideration of the original article. Limited English proficiency is a well-documented challenge reported by Latinx patients seeking care in the outpatient setting, resulting in mistrust of healthcare organizations and clinicians. The effects of LEP overlap substantially with challenges related to patients' immigration status, cultural traditions, and socioeconomic needs. Use of professional interpretation rather than ad hoc interpretation improves trust and satisfaction. There is no consensus about the most effective mode of delivering professional interpretation (in person, telephonic, video conferencing), although rapid simultaneous telephone translation is a promising modality. Increasing awareness of the barriers to effective communication, improving skills in communicating through translators, and increasing the amount of time spent with patients may improve communication and trust more than structural changes like mode of translation or bedside rounding. Cultural fluency training, standardized language training for providers, and incentive pay for fluency are also deserving of further consideration.