Pre-transplant evaluation completion for Black/African American renal patients: Two theoretical frameworks

ObjectiveBlack/African Americans (B/AA) are less likely to complete the pre-transplant evaluation for kidney transplantation despite higher prevalence rates of end-stage renal disease (ESRD). To better understand the barriers and motivators to completing the evaluation process, two qualitative studies were conducted to categorize and elucidate the relationships between these factors.MethodsIn Phase I, semi-structured interviews were conducted with a stratified purposeful sample of transplant professionals (N = 23). Focus groups were conducted during Phase II with a purposeful sample of B/AA patients (N = 30).ResultsThematic analyses assessed using grounded theory revealed a multitude of factors at individual and systemic levels, including health and informational/educational-related factors. Two comprehensive theoretical frameworks, a socio-ecological model of barriers and a model of motivators are presented. Medical mistrust is an example of a community factor identified as impeding completion rates. Systemic motivators included compressed time for testing and fewer intervals between doctor’s appointments.ConclusionsThis study offers a structure for understanding impediments to and facilitators of pre-transplant evaluation completion as seen through the eyes of both B/AA ESRD patients seeking transplant and the providers who work with them.Practice implicationsRecommendations for intervention and systemic changes to narrow health disparities are discussed.     

African-Americans with End Stage Renal Disease in the Early Years of Kidney Transplantation

Introduction. The first successful kidney transplant in humans was performed in 1954. In the following 25 years, the biomedical, ethical, and social implications of kidney transplantation were widely discussed by both healthcare professionals and the public. Issues relating to race, however, were not commonly addressed, representing a “blind spot” regarding racial disparities in access and health outcomes. Methods. Through primary sources in the medical literature and lay press, this paper explores the racial dynamics of kidney transplantation in the 1950–1970s in the United States as the procedure grew from an experimental procedure to the standard of care for patients in end-stage renal disease (ESRD). Results & Discussion. An extensive search of the medical literature found very few papers about ESRD, dialysis, or renal transplant that mentioned the race of the patients before 1975. While the search did not reveal whether race was explicitly used in determining patient access to dialysis or transplant, the scant data that exist show that African-Americans disproportionately developed ESRD and were underrepresented in these early treatment populations. Transplant outcome data in the United States failed to include race demographics until the late 1970s. The Social Security Act of 1972 (PL 92-603) extended Medicare coverage to almost all Americans with ESRD and led to a rapid increase in both dialysis and kidney transplantation for African-Americans in ESRD, but disparities persist today.     

Racial differences in pediatric renal transplantation-24-year single center experience

Racial disparities in quality of health are major issues affecting healthcare delivery. While substantial studies have been done in adults with end-stage renal disease (ESRD), similar studies are lacking in pediatric patients with ESRD. We retrospectively analyzed our transplant database from 1978-2002 to identify racial trends in a pediatric ESRD population. Significant racial differences were noted in number of pre-emptive transplants, type of graft received, height at transplant and causes of ESRD.     

Communication self-efficacy,perceived conversational difficulty,and renal patients’ discussions about transplantation

Objective

Many patients with chronic and end-stage renal disease (ESRD) have reported difficulties initiating and managing discussions about kidney transplantation, particularly live donor transplantation (LDT). Limited communication has demonstrable impact on patients’ access to transplantation, the duration of dialysis treatments, and the length of time awaiting a transplantable kidney. This formative study sought to identify the specific communicative and conversational elements impeding ESRD patients’ discussions about transplantation to inform the design of an educational program facilitating transplant-related discussions.

Methods

From March to July 2012, semi-structured telephone interviews (n = 63) were conducted with ESRD patients waitlisted for kidney transplantation at one mid-Atlantic transplant center.

Results

Although 85.7% (n = 54) of patients reported holding discussions about transplantation, qualitative analyses of open-ended responses revealed that the majority (66.7%) had limited conversations. Patients reported difficulties managing a variety of logistical and content-related aspects of LDT discussions. Moderate levels of communication self-efficacy were also found (mean = 19.2 out of 28); self-efficacy was highest among respondents having held discussions and was significantly related to perceived magnitude of difficulty handling conversational aspects.

Conclusion

Results support comprehensive communication skills training for ESRD patients awaiting kidney transplantation.

Practice implications

Potential topics to be included in such training are discussed.     

Preferences for relational style with mental health clinicians: a qualitative comparison of African American, Latino and Non-Latino White patients

The goal of this study is to analyze preferences for relational styles in encounters with mental health providers across racial and ethnic groups. Four primary themes describe what patients want from a mental health provider: listening, understanding, spending time, and managing differences. However, using contextual comparative analysis, the findings explicate how these themes are described differently across African Americans, Latinos, and non-Latino Whites, uncovering important qualitative differences in the meaning of these themes across the groups. The article suggests that closer attention to qualitative preferences for style of interaction with providers may help address disparities in mental health care for racial and ethnic minorities.     

The relationship between state-level structural racism and disparities between the non-hispanic black and non-hispanic white populations in multiple health outcomes

AimsWhile several studies have examined the impact of individual indicators of structural racism on single health outcomes, few have explicitly modeled racial disparities in a wide range of health outcomes using a multidimensional, composite structural racism index. This paper builds on the previous research by examining the relationship between state-level structural racism and a wider array of health outcomes, focusing on racial disparities in mortality from firearm homicide, infant mortality, stroke, diabetes, hypertension, asthma, HIV, obesity, and kidney disease.MethodsWe used a previously developed state structural racism index that consists of a composite score derived by averaging eight indicators across five domains: (1) residential segregation; (2) incarceration; (3) employment; (4) economic status/wealth; and (5) education. Indicators were obtained for each of the 50 states using Census data from 2020. We estimated the Black-White disparity in each health outcome in each state by dividing the age-adjusted mortality rate for the non-Hispanic Black population by the age-adjusted mortality rate for the non-Hispanic White population. These rates were obtained from the CDC WONDER Multiple Cause of Death database for the combined years 1999-2020. We conducted linear regression analyses to examine the relationship between the state structural racism index and the Black-White disparity in each health outcome across the states. In multiple regression analyses, we controlled for a wide range of potential confounding variables.ResultsOur calculations revealed striking geographic differences in the magnitude of structural racism, with the highest values generally being observed in the Midwest and Northeast. Higher levels of structural racism were significantly associated with greater racial disparities in mortality for all but two of the health outcomes.ConclusionsThere is a robust relationship between structural racism and Black-White disparities in multiple health outcomes across states. Programs and policies to reduce racial heath disparities must include strategies to help dismantle structural racism and its consequences.     

A qualitative investigation to inform yoga intervention recruitment practices for racial/ethnic minority adolescents in outpatient mental health treatment

ObjectiveYoga is recognized as an effective approach to improving overall physical and mental health; however, there may be perceived barriers to yoga participation, particularly among populations most at risk for mental health issues. We conducted qualitative formative research to help inform recruitment practices for a future study and to specifically understand the barriers and facilitators to engagement in yoga practice among racial/ethnic minority adolescents, as well as adolescents in outpatient mental health treatment.MethodsQualitative data were collected at a community health clinic that serves low income families in southeastern Florida. Using semi structured interviews with racial and ethnic minority adolescents between 12 and 17 years old, participants were asked about beliefs and perceptions about yoga, as well as recommendations on recruiting peers. A thematic analysis approach was used to identify and examine common themes.ResultsTwenty interviews were conducted and eight major themes emerged from the data. Themes were grouped as (1) Facilitators to recruitment and (2) Barriers to recruitment.InterpretationAdvertising free yoga that emphasizes the social, physical, and mental benefits can help assuage negative perceptions of yoga and promote the advantages of yoga among teenagers. Having recruitment materials and modalities that highlight inclusivity of all genders and physical abilities in the yoga classes are also important in facilitating participation. Understanding perceptions of yoga, as well as perceived barriers and facilitators, among racially/ethnically diverse adolescents in outpatient mental health treatment, can assist recruitment efforts, increase yoga intervention participation, and ultimately, improve mental health outcomes for underserved populations.     

Changes in Health Literacy during the first year following a kidney transplantation: Using the Health Literacy Questionnaire

ObjectivesThe study aimed to identify changes in health literacy (HL) and associated variables during the first year following a kidney transplantation.MethodsA total of 196 transplant recipients were included in a prospective follow-up study. The patients answered the Health Literacy Questionnaire (HLQ) at 5 days, 8 weeks, 6 and 12 months following the kidney transplantation. Mixed linear models were used to analyze changes in HL and backward elimination was used to identify variables associated with HL.ResultsTwo main patterns of change were identified: a) HL increased during the first 8 weeks of close follow-up and b) in several domains, the positive increase from 5 days to 8 weeks flattened out from 5 days to 6 and 12 months. Self-efficacy, transplant-related knowledge, and general health were core variables associated with HL.ConclusionsOverall, HL increased during the 8 weeks of close follow-up following the kidney transplantation, while 6 months seem to be a more vulnerable phase. Furthermore, low self-efficacy, less knowledge, and low self-perceived health may represent vulnerable characteristics in patients.Practical implicationsFuture kidney transplant care should take into account patients’ access to and appraisal of health information and social support, and draw attention to potentially vulnerable groups.     

A simulation model approach to analysis of the business case for eliminating health care disparities

Background  

Purchasers can play an important role in eliminating racial and ethnic disparities in health care. A need exists to develop a compelling "business case" from the employer perspective to put, and keep, the issue of racial/ethnic disparities in health care on the quality improvement agenda for health plans and providers.     

Anti-viral triple therapy with telaprevir in haemodialysed HCV patients: Is it feasible?

IntroductionChronic hepatitis C virus (HCV) infection is the most common chronic liver disease in patients with end stage renal disease (ESRD) and is well known as a frequent cause of mortality and graft loss among haemodialysed and kidney transplant patients. Up to now, there are no data on antiviral efficacy and tolerability of available protease inhibitors (telaprevir and boceprevir) in HCV infected haemodialysed patients.MethodsWe report 4 cases of HCV infected haemodialysed patients, who have not responded to a prior course of pegylated interferon (Peg-IFN) and ribavirin (RBV) and who were listed for kidney transplantation (KTx). These 4 patients received a second-line antiviral treatment with Peg-IFN, RBV and telaprevir.ResultsAfter 12 weeks of triple therapy, tolerability was acceptable and HCV-RNA became undetectable in 3/4 patients. Mild side-effects included anaemia leading to increasing the doses of erythropoietin (EPO). Dose of RBV ranged from 200 mg three times a week to 200 mg/day.ConclusionTriple therapy with a first generation protease inhibitor could be the new standard for the treatment of HCV patients with ESRD. This needs to be confirmed by larger series.     

Between and within race differences in patient-centeredness and activation in mental health care

ObjectivesThe aim of this study was to compare Black and White mental health care patients’ perceptions of their providers’ and their own participation in patient-centered mental health care. Perceptions of patient-centered care (PCC) in relation to the Multidimensional Model of Racial Identity were explored.MethodsBlack and White veterans receiving mental health care (n = 82) completed surveys assessing patient activation, involvement in care, perceptions of PCC, and therapeutic alliance. Black participants (n = 40) also completed the Multidimensional Inventory of Black Identity.ResultsThere were no differences by race in perceived PCC, though Black participants had lower levels of therapeutic alliance with their mental health care provider and were less activated. Black identity centrality, private regard, and public regard were positively related to PCC and elements of PCC such as patient information seeking/sharing.ConclusionsIntragroup identity variables such as racial centrality, regard, and ideology influenced perceived PCC among Black participants. Race identity variables should be explored in future research on racial disparities and PCC.Practice implicationsMental health care providers serving Black patients should create opportunities to discuss racial identity and race-related experiences as part of their efforts to improve therapeutic alliance and increase the patient-centeredness of care.     

Illness and treatment cognitions and health related quality of life in end stage renal disease

Objectives. Patients' beliefs regarding illness and treatment are important to understand responses to chronic disease. The present study aimed (i) to assess the illness representations and treatment disruption beliefs of patients with end stage renal disease (ESRD), (ii) to determine whether beliefs about illness and treatment differ between different renal replacement therapies, and (iii) to examine whether these beliefs are associated with health related quality of life (HQoL). Method. A cross‐sectional sample of 262 ESRD patients, 145 dialysis and 117 kidney transplant recipients completed the illness perceptions questionnaire, the illness effects questionnaire, the treatment effects questionnaire and the short form 36 health survey. Measures of ESRD severity/co‐morbidity and biochemistry were also collected. Results. HQoL levels were higher in transplant patients. Dialysis patients reported more symptoms associated with ESRD (p<.001), stronger chronic timeline beliefs (p<.001), lower control beliefs (p<.05), and more illness and treatment disruptiveness (ps<.01). Illness and treatment disruptiveness, consequences and identity were inversely associated with HQoL whereas control was positively associated with HQoL. Multiple regressions indicated that treatment and illness disruptiveness, identity and consequences beliefs accounted for 22.9–67.6% of the variance HQoL although specific multivariate correlates differed across physical and emotional HQoL and between dialysis and transplantation. Conclusions. The beliefs that patients hold about their illness and treatment appear to be related to the type renal replacement therapy being undertaken. These cognitions have associations with HQoL in dialysis and transplantation that are independent of those of socio‐demographic and clinical factors.     

Parental expectations of raising a child with disability in decision-making for prenatal testing and termination of pregnancy: A mixed methods study

ObjectiveTo examine attitudes toward prenatal testing and termination of pregnancy (TOP) among parents and obstetric providers in relation to their views on raising a child with disability.MethodsAn explanatory sequential mixed methods study. A survey among 274 parents and 141 providers was followed by interviews with 26 parents and 10 providers. Using multivariate analysis, the relationships between attitudes were examined. Thematic analysis was used to identify the reasons behind the attitudes.ResultsIn comparison with providers, parents reported more positive attitudes toward raising a child with disability and more moral views about TOP. Providers reported more variations in attitudes toward offering prenatal testing and TOP. Significant associations were found between attitudes toward prenatal testing, raising a child with disability, reproductive autonomy, and TOP. Three major themes were identified: (1) meanings of parenthood from genetic tests; (2) views toward TOP and parental responsibility; and (3) implications of advanced extended prenatal genetic testing.ConclusionsPerceived social–cultural norms of disabilities and parental expectations of raising a child with disability influence decision-making regarding TOP.Practice ImplicationsAs more conditions of the fetus are able to be detected, the social–cultural implications of the technology and disabilities need to be addressed in antenatal care.     

Patient and provider perspectives on preterm birth risk assessment and communication

ObjectiveTo describe and compare how obstetric patients and care providers view preterm birth risk assessment and communication.MethodsWe conducted eight focus groups with obstetric patients (n = 35) and 16 qualitative interviews with obstetric providers. Grounded theory was used to identify and analyze themes.ResultsPatients' knowledge about preterm birth varied greatly. Similar benefits and risks of preterm birth risk counseling were discussed by patients and providers with notable exceptions: patients cited preparedness as a benefit and providers cited maternal blame, patient alienation, and estimate uncertainty as potential risks. Most patients expressed a desire to know their personalized preterm birth risk during pregnancy. Providers differed in whether they offer universal versus selective, and quantitative versus qualitative, preterm birth risk counseling. Many providers expressed concern about discussing social and structural risk factors for preterm birth.ConclusionWhile many patients desired knowing their personalized preterm birth risk, prenatal care providers’ disclosure practices vary because of uncertainty of estimates, concerns about negative consequences and challenges of addressing systemic inequities and social determinants of health.Practice implicationsGiven the existing asymmetry of information about preterm birth risk, providers should consider patient preferences regarding and potential benefits and risks of such disclosure in their practice.     

Autism genetic testing: a qualitative study of awareness,attitudes, and experiences among parents of children with autism spectrum disorders

PurposeThe goal of this first-of-its-kind qualitative study was to examine the awareness, attitudes, and experiences among parents of autistic children regarding autism genetic testing.MethodsWe conducted in-depth, individual, and semistructured interviews with 42 parents of autistic children with diverse racial/ethnic backgrounds. All interviews were audio-taped, transcribed, and coded into major themes and subthemes.ResultsApproximately one-quarter of participants had two or more autistic children, and about half of them were ethnic/racial minorities. The majority of participants postulated favorable attitudes toward autism genetic testing for three main reasons: early intervention and treatment, identifying the etiology of autism, and informed family planning. Nevertheless, among parents who had taken their children for genetic testing, some expressed frustration and questioned the competency of their providers in interpreting test results. Asian parents and those with a low socioeconomic status expressed lower awareness and tended to have more limited access to autism genetic testing.ConclusionAs health-care providers play a vital role in providing genetic services and education, these professionals should be educated and be sensitive to the needs of parents with autistic children. Further quantitative research is required to examine the effects of socio-demographic factors on parents’ awareness, attitudes, and experiences regarding autism genetic testing.Genet Med 2013:15(4):274–281     

Helping young women go red: Harnessing the power of personal and digital information to prevent heart disease

ObjectiveCardiovascular disease (CVD) is the leading cause of death for American women, yet young women are rarely the target population of CVD prevention campaigns. This study investigated young women’s exposure to CVD information.MethodsWe surveyed 331 females ages 15–24 years to determine 1) whether participants felt informed about heart disease or stroke, 2) their exposure to heart disease information sources over the past year, and 3) whether they had ever discussed CVD-related topics with healthcare providers.ResultsOver half of participants reported feeling not informed about heart disease (52%) or stroke (59%). Participants were more likely to report feeling informed if they were exposed to information from websites or social media, or if they had ever discussed family history of heart disease, personal risk for heart disease, or high blood pressure with their healthcare provider.ConclusionsMost young women did not feel informed about CVD. Exposure to specific information sources and discussions with healthcare providers may help improve this.Practice implicationsPublic health campaigns should promote cardiovascular health through websites and social media popular amongst young women. Healthcare providers should discuss CVD risk factor modification with young patients in order to promote cardiovascular health across the life course.     

The effect of genetic education on the referral of patients to genetic evaluation: Findings from a national survey of nephrologists

PurposeThe success of genomic medicine hinges on the implementation of genetic knowledge in clinical settings. In novel subspecialties, it requires that clinicians refer patients to genetic evaluation or testing, however referral is likely to be affected by genetic knowledge.MethodsAn online survey was administered to self-identified nephrologists working in the United States. Nephrologists’ demographic characteristics, genetic education, confidence in clinical genetics, genetic knowledge, and referral rates of patients to genetic evaluation were collected.ResultsIn total, 201 nephrologists completed the survey. All reported treating patients with genetic forms of kidney disease, and 37% had referred <5 patients to genetic evaluation. A third had limited basic genetic knowledge. Most nephrologists (85%) reported concerns regarding future health insurance eligibility as a barrier to referral to genetic testing. Most adult nephrologists reported insufficient genetic education during residency (65%) and fellowship training (52%). Lower rating of genetic education and lower knowledge in recognizing signs of genetic kidney diseases were significantly associated with lower number of patients referred to the genetic evaluation (P < .001). Most nephrologists reported that improving their genetic knowledge is important for them (>55%).ConclusionsThere is a need to enhance nephrologists’ genetic education to increase genetic testing use in nephrology.     

An integrative review of stakeholder views on Advance Care Directives (ACD): Barriers and facilitators to initiation,documentation, storage,and implementation

ObjectiveTo examine the views and experiences of patients and their health care providers on developing advance care planning (ACP) and advance care directives (ACD); and determine barriers and facilitators to ACD development, storage, and use, including implications for people with communication disability.MethodAn integrative review of 93 studies, analysed according to their content themes.ResultsContent themes encapsulated the initiation, documentation, and implementation stages of ACP/ACD. Lack of guidance for initiating and supporting ACP/ACD impedes discussions, and both patients and healthcare providers avoid discussions owing to fear of dying and reluctance to think about end-of-life.ConclusionsThere are several barriers and facilitators to the initiation of ACP discussions, documentation and implementation of ACD, and little research exploring the views of legal professionals on the development, storage, or use of ACP documents. Further research is needed to explore the timing and responsibility of both legal and health professionals in initiating and supporting ACP discussions.Practice ImplicationsIt is important for healthcare providers to raise ACP discussions regularly so that patients have time to make informed advance care decisions. Storage of the document in an electronic health record might facilitate better access to and implementation of patients’ end-of-life care decisions.     

Patients’ expectations for and experiences with primary healthcare services received from a patient centered medical home

ObjectiveExpectations for and experiences with healthcare services are summarized for 1143 patients receiving care in a statewide demonstration of Patient Centered Medical Homes (PCMH).MethodsPatients were recruited from 91 primary care clinics for semi-structured interviews to determine what patients expect, what they plan to do and how they intend to execute their plans in partnership with their healthcare team.ResultsThe majority (78%) of patients defined the patient-team partnership as a collaborative and problem-solving effort. Overall, 68% defined responsibility for own health as a personal responsibility; 55% defined listening to patient’s concerns and answering questions as a responsibility of their healthcare team. Diet and exercise came up most frequently whether as a personal responsibility, issues for receiving additional help from their clinic, or plans for personal change.ConclusionPatients’ preferred a collaborative, problem-solving healthcare team partnership but also had boundaries for what additional services they wanted from this team.Practice Implications: Patients’ expectations for a collaborative partnership, acceptance of personal responsibility and interest in diet and exercise expands opportunities for patient education and teamwork. Clinics’ engagement with broader resources would be needed to address patients’ many and varied challenges to taking care of their health.     

Exploring health literacy and self-management after kidney transplantation: A prospective cohort study

ObjectiveInvestigate the influence of health literacy and self-management on complications, kidney function and graft failure after kidney transplantation.MethodsWe included patients who received a kidney transplant between May 2012 and May 2013 and monitored outcomes until December 2018. Health literacy was measured using the Newest Vital Sign and self-management using the Partner in Health scale (before discharge, and after 6 and 12 months). Subscales are aftercare & knowledge, coping, recognition and management of symptoms, healthy lifestyle. Complications were categorized as rejection, viral infections, and bacterial infections. Kidney function was measured using eGFR and graft survival using days until failure.ResultsWe included 154 patients. Higher health literacy at baseline and at 12 months was related to more viral infections (p = 0.02; p < 0.01). Lower ‘coping’ at baseline was related to more bacterial infections (p = 0.02). Higher ‘after-care and knowledge’ at 6 months (p < 0.01), and ‘recognition and management of symptoms’ at 6 months were associated with lower graft failure (p < 0.01).ConclusionHealth literacy did not influence kidney transplant related outcomes. Higher knowledge and management of symptoms were related to lower graft failure.Practice implicationsSelf-management support is a key focus for health care providers in the multidisciplinary team.