Improving Health Equity in Living Donor Kidney Transplant: Application of an Implementation Science Framework.

BACKGROUND: Interventions to improve racial equity in access to living donor kidney transplants (LDKT) have focused primarily on patients, ignoring the contributions of clinicians, transplant centers, and health system factors. Obtaining access to LDKT is a complex, multi-step process involving patients, their families, clinicians, and health system functions. An implementation science framework can help elucidate multi-level barriers to achieving racial equity in LDKT and guide the implementation of interventions targeted at all levels. METHODS: We adopted the Pragmatic Robust Implementation and Sustainability Model (PRISM), an implementation science framework for racial equity in LDKT. The purpose was to provide a guide for assessment, inform intervention design, and support planning for the implementation of interventions. RESULTS: We applied 4 main PRISM domains to racial equity in LDKT: Organizational Characteristics, Program Components, External Environment, and Patient Characteristics. We specified elements within each domain that consider perspectives of the health system, transplant center, clinical staff, and patients. CONCLUSION: The applied PRISM framework provides a foundation for the examination of multi-level influences across the entirety of LDKT care. Researchers, quality improvement staff, and clinicians can use the applied PRISM framework to guide the assessment of inequities, support collaborative intervention development, monitor intervention implementation, and inform resource allocation to improve equity in access to LDKT.

Racial Equity in Living Donor Kidney Transplant Centers, 2008-2018.

Importance: It is unclear whether center-level factors are associated with racial equity in living donor kidney transplant (LDKT). Objective: To evaluate center-level factors and racial equity in LDKT during an 11-year time period. Design, Setting, and Participants: A retrospective cohort longitudinal study was completed in February 2023, of US transplant centers with at least 12 annual LDKTs from January 1, 2008, to December 31, 2018, identified in the Health Resources Services Administration database and linked to the US Renal Data System and the Scientific Registry of Transplant Recipients. Main Outcomes and Measures: Observed and model-based estimated Black-White mean LDKT rate ratios (RRs), where an RR of 1 indicates racial equity and values less than 1 indicate a lower rate of LDKT of Black patients compared with White patients. Estimated yearly best-case center-specific LDKT RRs between Black and White individuals, where modifiable center characteristics were set to values that would facilitate access to LDKT. Results: The final cohorts of patients included 394 625 waitlisted adults, of whom 33.1% were Black and 66.9% were White, and 57 222 adult LDKT recipients, of whom 14.1% were Black and 85.9% were White. Among 89 transplant centers, estimated yearly center-level RRs between Black and White individuals accounting for center and population characteristics ranged from 0.0557 in 2008 to 0.771 in 2018. The yearly median RRs ranged from 0.216 in 2016 to 0.285 in 2010. Model-based estimations for the hypothetical best-case scenario resulted in little change in the minimum RR (from 0.0557 to 0.0549), but a greater positive shift in the maximum RR from 0.771 to 0.895. Relative to the observed 582 LDKT in Black patients and 3837 in White patients, the 2018 hypothetical model estimated an increase of 423 (a 72.7% increase) LDKTs for Black patients and of 1838 (a 47.9% increase) LDKTs for White patients. Conclusions and Relevance: In this cohort study of patients with kidney failure, no substantial improvement occurred over time either in the observed or the covariate-adjusted estimated RRs. Under the best-case hypothetical estimations, modifying centers' participation in the paired exchange and voucher programs and increased access to public insurance may contribute to improved racial equity in LDKT. Additional work is needed to identify center-level and program-specific strategies to improve racial equity in access to LDKT.

Living Kidney Donation Stories and Advice Shared Through a Digital Storytelling Library: A Qualitative Thematic Analysis.

Rationale & Objective: Despite the development of numerous educational interventions, there has been limited change in actual living donor kidney transplant (LDKT) rates over time. New strategies, such as the inclusion of patient stories in patient education, show promise to inspire more people to donate kidneys. This study identified the challenges faced, coping strategies used, and advice shared by transplant donors and recipients. Study Design: Qualitative thematic analysis. Setting & Participants: One hundred eighteen storytellers across the United States and Canada, including 82 living donors and 36 kidney recipients of living donor transplants who shared their stories on the Living Donation Storytelling Project (explorelivingdonation.org), an online digital storytelling platform and library. Analytical Approach: A poststorytelling survey assessed participant demographics. Two coders conducted tool-assisted (Dedoose v.8.3.35) thematic analysis on narrative storytelling videos and transcripts. Results: Storytellers were predominantly White (79/118, 66.95%), female (76/118, 64.41%), and non-Hispanic (109/118, 92.37%) with college/vocational education (50/118, 42.37%). Common themes were found related to living donation challenges for donors and recipients (eg, the fear of not being able to complete the LDKT process, of unsupportive family or rejected donation requests, and of unknown or adverse surgical outcomes and graft rejection) and recommended coping strategies (eg, seeking LDKT information, using prayer, and relying on a support network). Recipients provided advice that included being proactive and staying hopeful, whereas donors recommended seeking support, researching LDKT to comprehensively learn, and building a community of support. Limitations: Limited representation of diverse demographics. Conclusions: Although supplementary to traditional education about LDKT, digital storytelling provides a source of peer support that can enhance the experience of donors and recipients and encourage autonomy and self-management after transplant.

Stressors and Information-Seeking by Dialysis and Transplant Patients During COVID-19, Reported on a Telephone Hotline: A Mixed-Methods Study.

Rationale & Objective: In early 2020, we activated a telephone hotline, the coronavirus disease 2019 (COVID-19) Kidney or Transplant Listening and Resource Center, to learn more about the impact of the COVID-19 pandemic on the stress and information-seeking behaviors of dialysis and transplant patients. Study Design: A mixed-methods study including semi-structured, qualitative interviews probing about emotional, health, and financial challenges experienced and quantitative surveys assessing depression and anxiety levels and information-seeking behaviors. Setting & Participants: 99 participants (28 dialysis patients; 71 transplant patients), varying by race and ethnicity (Hispanic, 25.3%; White, 23.2%; Asian, 24.2%; Black, 24.2%), shared their COVID-19 pandemic experiences and information-seeking behaviors by telephone. Interviews and surveys were conducted from June 17, 2020, to November 24, 2020. Analytical Approach: Qualitative themes were identified using thematic analysis. Frequencies were calculated to assess levels of depression and anxiety using the Patient Health Questionnaire for Depression and Anxiety and types of information-seeking behaviors. Results: 7 themes and 16 subthemes emerged. Themes of commonly reported stressors include postponing medical visits; decreased accessibility of getting medication; difficulty in receiving up-to-date, patient-focused health information and dialysis supplies; and delays in medical appointments. Other stressors include losses of health insurance and income, and increased vigilance in behaviors to avoid contracting COVID-19. 15 participants had moderate to severe anxiety and depression symptoms and reported more frequent and severe panic attacks after the COVID-19 pandemic. Participants sought emotional support from family, friends, and faith communities. They also commonly obtained information from news media and reported needing more transplant-specific updates about COVID-19, and frequent communication from their kidney and transplant specialists. Limitations: This convenience sample of individuals willing to share their experiences through a telephone hotline may not generalize to all dialysis and transplant patients; stressors related to the COVID-19 pandemic for these patients continue to change. Conclusions: As the impact of the pandemic continues, needs-based interventions tailored for the kidney and transplant community, including access to mental health resources, education, and support for care transitions, should continue.

Findings of living donation experiences shared on a digital storytelling platform: A thematic analysis.

Objectives: To identify common experiences and emotional changes shared by living donors and kidney recipients about their living donation experiences on a digital storytelling platform. Methods: 82 donors and 36 recipients submitted prompt-guided videos to the platform. Two coders analyzed transcripts for motivations, common themes, and emotions expressed. Results: Storytellers shared their stories to advocate for living donation and contribute to others facing similar challenges. Pre-surgery, recipients recalled their dialysis experiences and how they sought living donors while donors discussed their motivations and common fears. Post-surgery, recipients discussed changes in their relationship with the donor and quality life, while donors described how they benefited. Learning they needed a transplant, recipients reported feeling fear (33.3%) while donors felt sadness (48.8%). Post-transplant, recipients and donors reported feeling happiness (85.4%, 38.9%) and relief (29.3%, 22.2%). Conclusion: Online digital storytelling libraries increase access to real-life living donation experiences. Since stories are highly personal, additional living donor kidney transplant risk-benefit education is needed. Innovation: Stories can supplement traditional education and be incorporated into advocacy efforts; campaigns could capitalize upon the personal aspect of stories to gently introduce and encourage living kidney donation among the general public.

Destination Transplant: Protocol for a Parallel-group Randomized Trial of an Educational Intervention to Increase Kidney Transplant Among Black People on the Transplant Waiting List.

For most patients with kidney failure, living donor kidney transplant (LDKT) is their best treatment option. Compared with White people, Black people are more likely to have kidney failure but less likely to receive LDKTs. In this study, the investigators will test an educational intervention, Destination Transplant, designed to reduce this disparity, among Black people already listed for kidney transplant. METHODS: The investigators will conduct a parallel group, 2-arm randomized clinical trial among 500 Black kidney transplant candidates. The main objective of this study is to test an educational and behavioral intervention that is designed to increase receipt of LDKT among transplant candidates (persons active on the deceased donor kidney transplant waiting list) who are Black. Candidates on the kidney transplant waiting list will be randomly assigned to 1 of 2 conditions: (1) a control group that will receive Usual Care, or (2) an Intervention group that will receive Destination Transplant, a 9-month intervention that includes an in-person group-based education session, postcards at monthly intervals, and a follow-up phone call from a transplant educator. At baseline and during 18 months of follow-up, demographic and clinical variables will be collected, as well as variables such as transplant derailers (factors that might be sources of delay, difficulty, or challenge to pursuing transplant), transplant knowledge, and health literacy, small steps taken to pursue LDKT, readiness for LDKT, decisional balance and self-efficacy LDKT, decisional conflict, family support, availability of potential living donors, and general health status. CONCLUSIONS: This educational intervention aims to increase both readiness to pursue LDKT and actual receipt of LDKTs among Black and African American patients who are already on the kidney transplant waiting list. The aim of the intervention is to reduce racial disparities in access to LDKT.

Self-Efficacy, Health Literacy, and Nutrition and Exercise Behaviors in a Low-Income, Hispanic Population.

Public health goals have emphasized healthy nutrition and exercise behaviors, especially in underserved populations. According to social cognitive theory (SCT), self-efficacy and capability (e.g., health literacy) may interact to predict preventative behaviors. We surveyed 100 low-income, native Spanish-speakers living in the United States who were low in English proficiency and predominantly of Mexican heritage. Participants reported their nutritional and exercise self-efficacy, Spanish health literacy, and nutrition and physical activity behaviors. Consistent with SCT, the interaction of self-efficacy and health literacy significantly predicted fruit and vegetable consumption and weekly exercise, and marginally predicted avoidance of high fat foods. For all three interactions, higher health literacy levels strengthened the positive relationship between self-efficacy and health behaviors. The results offer support for the tenets of SCT and suggest-for low-income, Spanish-speaking adults-that a combination of behavioral confidence and literacy capability are necessary to enact appropriate health behaviors.

Inter- and Intrapersonal Barriers to Living Donor Kidney Transplant among Black Recipients and Donors.

CONTEXT: End-stage renal disease (ESRD) is more common among Blacks, but Blacks are less likely to receive a live donor kidney transplant (LDKT). OBJECTIVE: The objective of this study is to identify barriers and coping mechanisms that Black LDKT recipients and donors experienced while receiving or donating a kidney. DESIGN: A qualitative study was conducted using structured interviews. Thematic analysis was used for data interpretation. PARTICIPANTS: All 20 participants identified as Black, with two participants identifying themselves as multiracial. The mean age for the 14 recipients was 60, and the average age for the 6 living donors was 47. RESULTS: Themes emerging from the data suggest both recipients and donors faced barriers in the LDKT experience. Recipients faced barriers associated with their denial and avoidance of the severity of their ESRD, their desire to maintain the privacy of their health status, and their refusal to approach potential donors. Donors encountered negative responses from others about the donors' desire to donate and the initial refusal of recipients to accept a LDKT offer. Recipients identified faith as a coping mechanism, while donors identified normalization of donation as their method of coping. Various types of social support helped donors and recipients navigate the transplant process. CONCLUSION: Black LDKT recipients and donors must overcome barriers prior to receiving or donating a kidney. Most of these barriers arise from communication and interactions with others that are either lacking or undesirable. Future interventions to promote LDKT among Blacks may benefit by specifically targeting these barriers.

The Utility of the Memorable Messages Framework as an Intermediary Evaluation Tool for Fruit and Vegetable Consumption in a Nutrition Education Program.

Additional strategies to evaluate the impact of community nutrition education programs on low-income individuals are needed. The objective of this qualitative study was to examine the use of the Memorable Messages Framework as an intermediary nutrition education program evaluation tool to determine what fruit and vegetable messages were reported as memorable and the characteristics of those memorable messages. A convenience sample of low-income, primarily African American adults (N = 58) who previously completed a series of community nutrition education lessons within an urban area of Indiana participated in a focus group (N = 8 focus groups). A lead moderator using a semistructured script conducted the focus groups to determine what information about fruits and vegetables was most memorable from the participants' nutrition lessons and why this information was memorable. All focus group audiotapes were transcribed verbatim and ATLAS.ti software was used to code and identify themes within the data. Participants cited quantity, variety, and the positive nutritional impact of eating fruits and vegetables as most memorable. Information given in the form of recipes was also cited as most memorable. For example, participants referred to the recipe demonstrations as not only fun but also key components of the program that helped with message retention and memorability. Key characteristics of memorable messages included personal relevance and message vividness. These findings indicated that the Memorable Messages Framework may serve as an intermediary program evaluation tool to identify what information and messages are most influential to participants in community nutrition education programs.

Applying best practices to designing patient education for patients with end-stage renal disease pursuing kidney transplant.

Despite the known benefits of kidney transplant, less than 30% of the 615 000 patients living with end-stage renal disease (ESRD) in the United States have received a transplant. More than 100 000 people are presently on the transplant waiting list. Although the shortage of kidneys for transplant remains a critical factor in explaining lower transplant rates, another important and modifiable factor is patients' lack of comprehensive education about transplant. The purpose of this article is to provide an overview of known best practices from the broader literature that can be used as an evidence base to design improved education for ESRD patients pursuing a kidney transplant. Best practices in chronic disease education generally reveal that education that is individually tailored, understandable for patients with low health literacy, and culturally competent is most beneficial. Effective education helps patients navigate the complex health care process successfully. Recommendations for how to incorporate these best practices into transplant education design are described. Providing more ESRD patients with transplant education that encompasses these best practices may improve their ability to make informed health care decisions and increase the numbers of patients interested in pursuing transplant.

Measuring kidney patients' motivation to pursue living donor kidney transplant: development of stage of change, decisional balance and self-efficacy measures.

While educational interventions to increase patient motivation to pursue living donor kidney transplant have shown success in increasing living donor kidney transplant rates, there are no validated, theoretically consistent measures of Stage of Change, a measure of readiness to pursue living donor kidney transplant; Decisional Balance, a weighted assessment of living donor kidney transplant's advantages/disadvantages; and Self-Efficacy, a measure of belief that patients can pursue living donor kidney transplant in difficult circumstances. This study developed and validated measures of these three constructs. In two independent samples of kidney patients (N 1 = 279 and N 2 = 204), results showed good psychometric properties and support for their use in the assessment of living donor kidney transplant interventions.

Your Path to Transplant: a randomized controlled trial of a tailored computer education intervention to increase living donor kidney transplant.

BACKGROUND: Because of the deceased donor organ shortage, more kidney patients are considering whether to receive kidneys from family and friends, a process called living donor kidney transplantation (LDKT). Although Blacks and Hispanics are 3.4 and 1.5 times more likely, respectively, to develop end stage renal disease (ESRD) than Whites, they are less likely to receive LDKTs. To address this disparity, a new randomized controlled trial (RCT) will assess whether Black, Hispanic, and White transplant patients' knowledge, readiness to pursue LDKT, and receipt of LDKTs can be increased when they participate in the Your Path to Transplant (YPT) computer-tailored intervention. METHODS/DESIGN: Nine hundred Black, Hispanic, and White ESRD patients presenting for transplant evaluation at University of California, Los Angeles Kidney and Pancreas Transplant Program (UCLA-KPTP) will be randomly assigned to one of two education conditions, YPT or Usual Care Control Education (UC). As they undergo transplant evaluation, patients in the YPT condition will receive individually-tailored telephonic coaching sessions, feedback reports, video and print transplant education resources, and assistance with reducing any known socioeconomic barriers to LDKT. Patients receiving UC will only receive transplant education provided by UCLA-KPTP. Changes in transplant knowledge, readiness, pros and cons, and self-efficacy to pursue LDKT will be assessed prior to presenting at the transplant center (baseline), during transplant evaluation, and 4- and 8-months post-baseline, while completion of transplant evaluation and receipt of LDKTs will be assessed at 18-months post-baseline. The RCT will determine, compared to UC, whether Black, Hispanic, and White patients receiving YPT increase in their readiness to pursue LDKT and transplant knowledge, and become more likely to complete transplant medical evaluation and pursue LDKT. It will also examine how known patient, family, and healthcare system barriers to LDKT act alone and in combination with YPT to affect patients' transplant decision-making and behavior. Statistical analyses will be performed under an intent-to-treat approach. DISCUSSION: At the conclusion of the study, we will have assessed the effectiveness of an innovative and cost-effective YPT intervention that could be utilized to tailor LDKT discussion and education based on the needs of individual patients of different races in many healthcare settings. TRIAL REGISTRATION: ClinicalTrials.gov, number NCT02181114.

Lung transplant or bust: patients' recommendations for ideal lung transplant education.

CONTEXT: Effective lung transplant education helps ensure informed decision making by patients and better transplant outcomes. OBJECTIVE: To understand the educational needs and experiences of lung transplant patients. DESIGN: Mixed-method study employing focus groups and patient surveys. SETTING: Barnes-Jewish Hospital in St Louis, Missouri. PATIENTS: 50 adult lung transplant patients: 23 pretransplant and 27 posttransplant. MAIN OUTCOME MEASURES: Patients' interest in receiving specific transplant information, the stage in the transplant process during which they wanted to receive the education, and the preferred format for presenting the information. RESULTS: Patients most wanted information about how to sustain their transplant (72%), when to contact their coordinator immediately (56%), transplant benefits (56%), immunosuppressants (54%), and possible out-of-pocket expenses (52%). Patients also wanted comprehensive information early in the transplant process and a review of a subset of topics immediately before transplant (time between getting the call that a potential donor has been found and getting the transplant). Patients reported that they would use Internet resources (74%) and converse with transplant professionals (68%) and recipients (62%) most often. DISCUSSION: Lung transplant patients are focused on learning how to get a transplant and ensuring its success afterwards. A comprehensive overview of the evaluation, surgery, and recovery process at evaluation onset with a review of content about medications, pain management, and transplant recovery repeated immediately before surgery is ideal.

Perceived visual informativeness (PVI): construct and scale development to assess visual information in printed materials.

There is a paucity of research on the visual images used in health communication messages and campaign materials. Even though many studies suggest further investigation of these visual messages and their features, few studies provide specific constructs or assessment tools for evaluating the characteristics of visual messages in health communication contexts. The authors conducted 2 studies to validate a measure of perceived visual informativeness (PVI), a message construct assessing visual messages presenting statistical or indexical information. In Study 1, a 7-item scale was created that demonstrated good internal reliability (α = .91), as well as convergent and divergent validity with related message constructs such as perceived message quality, perceived informativeness, and perceived attractiveness. PVI also converged with a preference for visual learning but was unrelated to a person's actual vision ability. In addition, PVI exhibited concurrent validity with a number of important constructs including perceived message effectiveness, decisional satisfaction, and three key public health theory behavior predictors: perceived benefits, perceived barriers, and self-efficacy. Study 2 provided more evidence that PVI is an internally reliable measure and demonstrates that PVI is a modifiable message feature that can be tested in future experimental work. PVI provides an initial step to assist in the evaluation and testing of visual messages in campaign and intervention materials promoting informed decision making and behavior change.

The conceptualization and measurement of cognitive health sophistication.

This article develops a conceptualization and measure of cognitive health sophistication--the complexity of an individual's conceptual knowledge about health. Study 1 provides initial validity evidence for the measure--the Healthy-Unhealthy Other Instrument--by showing its association with other cognitive health constructs indicative of higher health sophistication. Study 2 presents data from a sample of low-income adults to provide evidence that the measure does not depend heavily on health-related vocabulary or ethnicity. Results from both studies suggest that the Healthy-Unhealthy Other Instrument can be used to capture variability in the sophistication or complexity of an individual's health-related schematic structures on the basis of responses to two simple open-ended questions. Methodological advantages of the Healthy-Unhealthy Other Instrument and suggestions for future research are highlighted in the discussion.

Why are Tailored Messages More Effective? A Multiple Mediation Analysis of a Breast Cancer Screening Intervention.

Past research has found that tailoring increases the persuasive effectiveness of a message. However, the observed effect has been small and the explanatory mechanism remains unknown. To address these shortcomings, a tailoring software program was created that personalized breast cancer screening pamphlets according to risk, health belief model constructs, and visual preference. Women aged 40 and older (N = 119) participated in a 2 (tailored vs. stock message) × 2 (charts/graphs vs. illustrated visuals) × 3 (nested replications of the visuals) experiment. Participants provided with tailored illustrated pamphlets expressed greater breast cancer screening intentions than those provided with other pamphlets. In a test of 10 different mediators, perceived message relevance was found to fully mediate the tailoring × visual interaction.

The Foreign Language Anxiety in a Medical Office Scale: developing and validating a measurement tool for Spanish-speaking individuals.

Communication research has been hindered by a lack of validated measures for Latino populations. To develop and validate a foreign language anxiety in a medical office scale (the Foreign Language Anxiety in a Medical Office Scale [FLAMOS]), the authors conducted a survey of low income, primarily Spanish-speaking Latinos (N=100). The scale factored into a unidimensional construct and showed high reliability (α=.92). The Foreign Language Anxiety in a Medical Office Scale also demonstrated convergent and divergent validity compared with other communication anxiety scales (Personal Report of Communication Apprehension-24, Communication Anxiety Inventory, and Recipient Apprehension Test), and predictive validity for acculturation measures (the Short Acculturation Scale for Hispanics). The Foreign Language Anxiety in a Medical Office Scale provides a validated measure for researchers and may help to explain Latino health care communication barriers.

Including limitations in news coverage of cancer research: effects of news hedging on fatalism, medical skepticism, patient trust, and backlash.

Past research has demonstrated that news coverage of cancer research, and scientific research generally, rarely contains discourse-based hedging, including caveats, limitations, and uncertainties. In a multiple message experiment (k = 4 news stories, N = 1082), the authors examined whether hedging shaped the perceptions of news consumers. The results revealed that participants were significantly less fatalistic about cancer (p = .039) and marginally less prone to nutritional backlash (p = .056) after exposure to hedged articles. Participants exposed to articles mentioning a second researcher (unaffiliated with the present study) exhibited greater trust in medical professions (p = .001). The findings provide additional support for the inclusion of discourse-based hedging in cancer news coverage and suggest that news consumers will use scientific uncertainty in illness representations.

Dispositional cancer worry: convergent, divergent, and predictive validity of existing scales.

Past research has suggested that dispositional cancer worry may be a key predictor of health behavior. The current study examined seven measures of dispositional cancer worry to see if they were significantly related (convergent validity), significantly different from similar but distinct traits (divergent validity), and capable of predicting cancer-relevant outcomes (predictive validity). Four hundred and eighty nine undergraduate students completed a survey measuring dispositional worry, dispositional cancer worry, and perceived cancer risk. Factor analysis identified four underlying dimensions that explained 67.3% of the variance in dispositional cancer worry: severity (42.8%), frequency (12.3%), psychological reactance (6.9%), and worry impact (5.3%). Four existing measures of dispositional cancer worry were found to represent each of these dimensions. In general, dispositional cancer worry measures were highly correlated with one another and only moderately correlated with measures of dispositional worry, supporting strong convergent and divergent validity. Hierarchical regression analyses revealed that dispositional cancer worry measures predicted significant variance in cancer-relevant outcomes above and beyond dispositional worry. The results of the current study support the notion that dispositional cancer worry and dispositional worry are distinct constructs. Furthermore, two dimensions of dispositional cancer worry (severity and frequency) seemed to have the strongest convergent, divergent, and predictive validity.