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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

Patient-provider communication and low-income adults: age, race, literacy, and optimism predict communication satisfaction.

OBJECTIVE: To assess whether literacy, numeracy, and optimism are related to low-income adults' satisfaction with their healthcare provider's communication skills. METHODS: Low-income adults (N=131) were recruited from seven counties in Indiana through University extension programs. To achieve research triangulation, participants were surveyed and interviewed about their communication satisfaction with health providers. RESULTS: Survey data revealed that four variables significantly predicted satisfaction: age, race, literacy, and optimism. Low-income adults in the current study were more critical of their healthcare provider's communication skills if they were younger, White, functionally literate, and pessimistic. Follow-up interviews confirmed this pattern and suggested it was a byproduct of patient activism. CONCLUSION: In low-income populations, communication satisfaction may be lower for groups that are traditionally active in doctor-patient interactions (e.g., younger patients, patients with higher literacy skills). PRACTICE IMPLICATIONS: Healthcare providers should be aware that older, non-White, optimistic, and literacy deficient patients report greater communication satisfaction than their younger, White, pessimistic, and functionally literate peers. Both groups may be coping with their situation, the former by withdrawing and the latter by actively pushing for a higher standard of care. Healthcare providers should continue to seek out ways to facilitate dialogue with these underserved groups.

Utilization of internet technology by low-income adults: the role of health literacy, health numeracy, and computer assistance.

OBJECTIVE: To examine whether low-income adults' utilization of Internet technology is predicted or mediated by health literacy, health numeracy, and computer assistance. METHOD: Low-income adults (N = 131) from the midwestern United States were surveyed about their technology access and use. RESULTS: Individuals with low health literacy skills were less likely to use Internet technology (e.g., email, search engines, and online health information seeking), and those with low health numeracy skills were less likely to have access to Internet technology (e.g., computers and cell phones). Consistent with past research, males, older participants, and those with less education were less likely to search for health information online. The relationship between age and online health information seeking was mediated by participant literacy. DISCUSSION: The present study suggests that significant advances in technology access and use could be sparked by developing technology interfaces that are accessible to individuals with limited literacy skills.