Controlling Hypertension through Education and Coaching in Kidney Disease (CHECK-D): protocol of a cluster randomised controlled trial.

INTRODUCTION: Chronic kidney disease (CKD) affects 30 million Americans. Early management focused on blood pressure (BP) control decreases cardiovascular morbidity and mortality. Less than 40% of patients with CKD achieve recommended BP targets due to many barriers. These barriers include a lack of understanding of the implications of their diagnosis and how to optimise their health.This cluster randomised control trial hypothesises that the combination of early primary care CKD education, and motivational interviewing (MI)-based health coach support, will improve patient behaviours aligned with BP control by increasing patient knowledge, self-efficacy and motivation. The results will aid in sustainable interventions for future patient-centric education and coaching support to improve quality and outcomes in patients with CKD stages 3-5. Outcomes in patients with CKD stages 3-5 receiving the intervention will be compared with similar patients within a control group. Continuous quality improvement (CQI) and systems methodologies will be used to optimise resource neutrality and leverage existing technology to support implementation and future dissemination. The innovative approach of this research focuses on the importance of a multidisciplinary team, including off-site patient coaching, that can intervene early in the CKD care continuum by supporting patients with education and coaching. METHODS AND ANALYSIS: We will test impact of BP control when clinician-delivered education is followed by 12 months of MI-based health coaching. We will compare outcomes in 350 patients with CKD stages 3-5 between intervention and control groups in primary care. CQI and systems methodologies will optimise education and coaching for future implementation and dissemination. ETHICS AND DISSEMINATION: This study was approved by the University of Michigan Institutional Review Boards (IRBMED) HUM00136011, HUM00150672 and SITE00000092 and the results of the study will be published on ClinicalTrials.gov, in peer-reviewed journals, as well as conference abstracts, posters and presentations. TRIAL REGISTRATION NUMBER: NCT04087798.

Patient-Centered Outcomes With a Multidisciplinary CKD Care Team Approach: An Observational Study.

Rationale & Objective: Multidisciplinary chronic kidney disease (CKD) care has been associated with improved clinical outcomes in comparison to general nephrology care. However, there is little research examining the impact of multidisciplinary care on patient-centered outcomes. We examined if a multidisciplinary approach to CKD care was associated with 4 patient-centered outcomes. Study Design: Cross-sectional study design using previously established surveys to assess patient-centered outcomes in participants with nondialysis CKD. Setting & Participants: Adults with CKD stages 1-5 who had not undergone transplant or were not on dialysis. Exposures: General nephrology care or multidisciplinary care. Patients receiving multidisciplinary care were seen by a pharmacist, social worker, dietitian, and nephrologist, whereas patients receiving general nephrology care only saw a nephrologist. Outcomes: Four patient-centered outcomes: CKD-specific knowledge, disease-related stress, perception of overall health, and perception of health status compared to 1 year ago. Analytical Approach: Differences were examined using a Welch 2-sample t test and linear regression model. Results: Mean age of participants was 60 years with standard deviation of 17 years. 182 (77%) patients were White, and 230 (96%) had formal education greater than or equal to high school. 121 (49%) were women, and 215 (88%) had CKD stage 3-5. 77 (31%) received multidisciplinary care. We did not identify any significant differences in patient knowledge, stress, or perception of health between multidisciplinary and general nephrology care. However, notably, patients in multidisciplinary care were older and had more advanced CKD than those in general nephrology care. Limitations: Cross-sectional study designs only identify associations. Study was conducted at clinics located within 30 miles of each other, limiting generalizability. Conclusions: Our results suggest that a team-based approach to care can better support sicker, more vulnerable patients so that they can achieve similar patient-centered outcomes compared to patients who are younger and with less advanced CKD.

Associations of Anxiety during the COVID-19 Pandemic with Patient Characteristics and Behaviors in CKD Patients: Findings from the Chronic Renal Insufficiency Cohort (CRIC) Study.

Background: Chronic kidney disease (CKD) is associated with anxiety and depression. Although the coronavirus disease 2019 (COVID-19) pandemic has increased stressors on patients with CKD, assessments of anxiety and its predictors and consequences on behaviors, specifically virus mitigation behaviors, are lacking. Methods: From June to October 2020, we administered a survey to 1873 patients in the Chronic Renal Insufficiency Cohort (CRIC) Study, asking participants about anxiety related to the COVID-19 pandemic. We examined associations between anxiety and participant demographics, clinical indexes, and health literacy and whether anxiety was associated with health-related behaviors and COVID-19 mitigation behaviors. Results: The mean age of the study population was 70 years (SD=9.6 years), 47% were women, 39% were Black non-Hispanic, 14% were Hispanic, and 38% had a history of cardiovascular disease. In adjusted analyses, younger age, being a woman, Hispanic ethnicity, cardiovascular disease, household income <$20,000, and marginal or inadequate health literacy predicted higher anxiety. Higher global COVID-19-related anxiety scores were associated with higher odds of reporting always wearing a mask in public (OR=1.3 [95% CI, 1.14 to 1.48], P<0.001) and of eating less healthy foods (OR=1.29 [95% CI, 1.13 to 1.46], P<0.001), reduced physical activity (OR=1.32 [95% CI, 1.2 to 1.45], P<0.001), and weight gain (OR=1.23 [95% CI, 1.11 to 1.38], P=0.001). Conclusions: Higher anxiety levels related to the COVID-19 pandemic were associated not only with higher self-reported adherence to mask wearing but also with higher weight gain and less adherence to healthy lifestyle behaviors. Interventions are needed to support continuation of healthy lifestyle behaviors in patients with CKD experiencing increased anxiety related to the pandemic.

The CKD Stress Scale: Development and identification of patients at risk.

AIMS: Develop a novel chronic kidney disease (CKD)-specific stress scale and examine associations with patient characteristics. MATERIALS AND METHODS: Adults with CKD stages 1 - 5 enrolled in a cross-sectional survey. Eight questions assessed patients' thoughts and feelings of stress related to CKD (CKD Stress Scale). Patients also reported their knowledge of CKD, barriers to CKD health, and demographics. The scale was evaluated using exploratory factor analysis and Cronbach's alpha. Associations were examined via linear regression. RESULTS: 245 participant enrolled with a mean age of 60 years and a mean estimated glomerular filtration rate (eGFR) of 34 mL/min/1.73m2; 49% were women (match percentage in Table 1), 74% White, 14% African American. A one-factor model of CKD Stress exhibited high internal consistency (α = 0.89). In bivariate analyses, higher CKD Stress was associated with lower eGFR, younger age, African American race (compared to White), and having a high school education or some college (compared to college degree or higher). Adjusting for these characteristics, as well as income and knowledge about CKD, only lower eGFR (b = -0.01; 95% CI [-0.01, -0.001]), younger age (b = -0.01; 95% CI [-0.01, -0.003]), African American race (b = 0.35, 95% CI [0.10, 0.60]), and receiving a high school education or some college (b = 0.20, 95% CI [0.01, 0.39]) were independently associated with more CKD-specific stress. Concurrent validity was supported by associations between stress and perceived barriers to care. CONCLUSION: Our CKD Stress Scale exhibits excellent internal reliability and identified where future educational interventions may benefit from tailoring for at-risk patients.

Obstetric Deliveries in US Women With ESKD: 2002-2015.

RATIONALE & OBJECTIVE: Women with end-stage kidney disease (ESKD) have decreased fertility and are at increased risk for pregnancy complications. This study examined secular trends and outcomes of obstetric deliveries in a US cohort of women with ESKD. STUDY DESIGN: Retrospective cohort study. SETTING & PARTICIPANTS: Women aged 18 to 44 years with ESKD and registered in the US Renal Data System from 2002 to 2015. EXPOSURE: ESKD modality (hemodialysis [HD], peritoneal dialysis, transplantation). OUTCOMES: Infant delivery, preterm delivery, cesarean delivery. ANALYTICAL APPROACH: Unadjusted delivery rates were expressed as number of delivering women per 1,000 patient-years among women aged 18 to 44 years within each year during the study period, stratified by ESKD modality. Logistic regression models were used to evaluate associations of delivery, preterm delivery, and cesarean delivery with patient characteristics. RESULTS: The delivery rate in women undergoing HD and women with a kidney transplant increased from 2.1 to 3.6 and 3.1 to 4.6 per 1,000 patient-years, respectively (P<0.001 for each). The delivery rate in patients undergoing peritoneal dialysis was lower and did not increase significantly (P=0.9). Women with a transplant were less likely to deliver preterm compared with women undergoing HD (OR, 0.92; 95% CI, 0.84-1.00), though more likely have a cesarean delivery (OR, 1.18; 95% CI, 1.06-1.31). For deliveries occurring in the 2012 to 2015 period, 75% of women treated with HD were prescribed 4 or fewer outpatient HD treatments per week and 25% were prescribed 5-plus treatments per week in the 30 days before delivery. LIMITATIONS: Ascertainment of outcomes and comorbid conditions using administrative claims data. CONCLUSIONS: The delivery rate in women of reproductive age with ESKD increased from 2002 to 2015 among those treated with transplantation or HD. Women with a functioning transplant were less likely to deliver preterm, but more likely to have a cesarean delivery. Prescriptions for outpatient intensified HD for pregnant women with ESKD were infrequent in 2012 to 2015.

Novel educational and goal-setting tool to improve knowledge of chronic kidney disease among liver transplant recipients: A pilot study.

INTRODUCTION: Liver transplant (LT) recipients have limited understanding of post-transplant chronic kidney disease (CKD) despite an excellent pre-existing framework of transplant care. This pilot study examined the efficacy and feasibility of a tailored educational and goal-setting tool in improving CKD knowledge among LT recipients with early-stage CKD. METHODS: In this prospective cohort study, we administered the CKD educational and goal-setting tool to 81 LT recipients between 7/1/2016 and 12/31/2017. We excluded patients with simultaneous liver-kidney transplantation, eGFR<30 ml/min, non-English speaking, on hemodialysis or listed for kidney transplantation. The pre- and post-education knowledge scores were compared using a paired t-test. Linear regression was used to assess the independent predictors of change in knowledge score. RESULTS: Mean age was 56.3 years, 69.1% were males, 85.2% were Caucasians and mean eGFR was 61.2 ± 20.0 ml/min. The CKD educational and goal-setting tool improved the CKD knowledge scores among LT recipients (pre: 71.8 ± 16.6%, post: 83.3 ± 10.4%; p<0.001). In an adjusted model (r2 = 0.75), those with lower pre-education knowledge scores had the most improvement in their post-education knowledge scores (ß = -83.2; p<0.001). Two-thirds stated their most important self-management goal and reported motivation to follow this goal. Time spent for the CKD education was approximately 15 minutes. CONCLUSIONS: A simple LT-specific patient educational and goal-setting tool effectively improved CKD knowledge. Implementation of this tailored intervention will improve CKD awareness and may promote goal-setting in the target population.

Patients' and Nephrologists' Evaluation of Patient-Facing Smartphone Apps for CKD.

BACKGROUND AND OBJECTIVES: Many aspects of CKD management rely heavily on patient self-care, including medication and dietary adherence, self-monitoring of BP, and daily physical activity. Growing evidence suggests that incorporating smartphone-based applications can support self-care in CKD and chronic disease more generally. DESIGN, SETTING, PARTICIPANTS, & MEASUREMENTS: We identified applications targeting patients with CKD by conducting a search of the US Apple App Store (iOS) and Google Play Store (Android) using the following four phrases: "kidney disease," "renal," "dialysis," and "kidney transplant." We considered the first 50 applications for each search term on each application store. We adapted a previously described framework for assessment of mobile health applications to account for kidney disease-specific content areas and evaluated applications on their types of patient engagement, quality, usability, and safety. Engagement and quality were assessed by both a patient and a nephrologist, usability was assessed by a patient, and safety was assessed by a nephrologist. Overall, two patients with CKD and three nephrologists performed the evaluations. We examined pairwise correlations between patient, nephrologist, and consumer ratings of application quality. RESULTS: Our search strategy identified 174 unique applications on Android and 165 unique applications on iOS. After excluding applications that were not related to kidney disease, were not patient facing, or were last updated before 2014, 12 Android-only applications, 11 iOS-only applications, and five dual-platform applications remained. Patient and nephrologist application quality ratings, assessed by the net promoter score, were not correlated (r=0.36; P=0.06). Consumer ratings on the application stores did not correlate with patient ratings of application quality (r=0.34; P=0.18). CONCLUSIONS: Only a small subset of CKD applications was highly rated by both patients and nephrologists. Patients' impressions of application quality are not directly linked to consumer application ratings or nephrologist impressions.

Patient-selected media and knowledge of risk to kidneys of nonsteroidal anti-inflammatory drugs.

OBJECTIVES: Nonsteroidal anti-inflammatory drugs (NSAIDs) can cause community-acquired acute kidney injury, especially in high-risk populations. Both the U.S. Food and Drug Administration (FDA) medication guide and over-the-counter labeling vaguely describe kidney risks of NSAIDs and do not provide information for patients to evaluate their risk for kidney problems. The purpose of this study was to use a mobile application to evaluate the impact of patient choice of media delivering NSAID avoidance education on patient knowledge about kidney risks associated with NSAIDs. DESIGN: Prospective cohort study. The mobile application was used to deliver either a redesigned FDA medication guide or a video focused on NSAID risks (selected by the patient), followed by patient knowledge questions (PKQs) and a kidney risk assessment. SETTING AND PARTICIPANTS: One hundred fifty adult primary care patients in southeast Michigan. MAIN OUTCOME MEASURES: The primary outcome was the score on 5 NSAID PKQs between the media selected. Secondary outcomes included characterization of media choice among different demographic and NSAID kidney risk groups. The relationship between kidney risk assessment and self-reported NSAID avoidance behavior also was evaluated. RESULTS: The majority of participants (72.7%) chose to review print material. Those that chose print had significantly higher PKQ scores (5 total points) compared with participants who selected the video: mean scores 4.2 ± 0.9 with print and 3.8 ± 1.0 with video (P = 0.034). Older patients (>65 years) had significantly lower PKQ scores compared with other age groups. Forty-four percent of individuals (n = 66) reported current NSAID use, and 65% stated that they would avoid NSAIDs after the selected education material. CONCLUSION: Scores for questions related to NSAID kidney risk knowledge were higher among participants who chose print compared with video education material. Education regarding NSAID kidney risks encouraged patients to limit their use. Targeted education may be beneficial in high-risk (e.g., older) patients and should be further studied.

Health Behaviors in Younger and Older Adults With CKD: Results From the CRIC Study.

INTRODUCTION: A cornerstone of kidney disease management is participation in guideline-recommended health behaviors. However, the relationship of these health behaviors with outcomes, and the identification of barriers to health behavior engagement, have not been described among younger and older adults with chronic kidney disease. METHODS: Data from a cohort study of 5499 individuals with chronic kidney disease was used to identify health behavior patterns with latent class analysis stratified by age <65 and ≥65 years. Cox models, stratified by diabetes, assessed the association of health behavior patterns with chronic kidney disease (CKD) progression, atherosclerotic events, and death. Logistic regression was used to assess for barriers to health behavior engagement. RESULTS: Three health behavior patterns were identified: 1 "healthy" pattern, and 2 "less healthy" patterns comprising 1 pattern with more obesity and sedentary activity and 1 with more smoking and less obesity. Less healthy patterns were associated with an increased hazard of poor outcomes. Among participants <65 years of age, the less healthy patterns (vs. healthy pattern) was associated with an increased hazard of death in diabetic individuals (hazard ratio [HR] = 2.17, 95% confidence interval [CI] = 1.09-4.29; and HR = 2.50, 95% CI = 1.39-4.50) and cardiovascular events among nondiabetic individuals (HR = 1.49, 95% CI = 1.04-2.43; and HR = 2.97, 95% CI = 1.49-5.90). Individuals with the more obese/sedentary pattern had an increased risk of CKD progression in those who were diabetic (HR = 1.34, 95% CI = 1.13-1.59). Among older adults, the less healthy patterns were associated with increased risk of death (HR = 2.97, 95% CI = 1.43-6.19; and HR = 3.47, 95% CI = 1.48-8.11) in those who were nondiabetic. Potential barriers to recommended health behaviors include lower health literacy and self-efficacy. CONCLUSION: Identifying health behavior patterns and barriers may help target high-risk groups for strategies to increase participation in health behaviors.

The Perceived Medical Condition Self-Management Scale can be applied to patients with chronic kidney disease.

Chronic Kidney Disease (CKD) is a major burden on patients and the health care system. Treatment of CKD requires dedicated involvement from both caretakers and patients. Self-efficacy, also known as perceived competence, contributes to successful maintenance of patient's CKD self-management behaviors such as medication adherence and dietary regulations. Despite a clear association between self-efficacy and improved CKD outcomes, there remains a lack of validated self-report measures of CKD self-efficacy. To address this gap, the Perceived Kidney/Dialysis Self-Management Scale (PKDSMS) was adapted from the previously validated Perceived Medical Condition Self-Management Scale. We then sought to validate this using data from two separate cohorts: a cross-sectional investigation of 146 patients with end-stage renal disease receiving maintenance hemodialysis and a longitudinal study of 237 patients with CKD not receiving dialysis. The PKDSMS was found to be positively and significantly correlated with self-management behaviors and medication adherence in both patient cohorts. The PKDSMS had acceptable reliability, was internally consistent, and exhibited predictive validity between baseline PKDSMS scores and self-management behaviors across multiple time points. Thus, the PKDSMS is a valid and reliable measure of CKD patient self-efficacy and supports the development of interventions enhancing perceived competence to improve CKD self-management.

Education and screening for chronic kidney disease in Indian youth: pilot program results.

BACKGROUND: There is a paucity of information on kidney education and screening programs in Indian youth. METHODS: Participants (n=2,158) from Chennai colleges were educated about the kidneys and chronic kidney disease (CKD) and screened in a pilot program from April to May 2013. This entailed: 1) a presentation and educational video and 2) an on-site assessment of weight, blood pressure, and demographic information. Urinalysis (UA) kits were distributed and returned in ≤48 hours. We examined participant characteristics and their association with dipstick proteinuria using logistic regression. RESULTS: The mean (standard deviation [SD]) age was 18.9 (1.6) years, and 1,451 (68%) were men. Mean (SD) body mass index (BMI) was 21.9 (4.3) kg/m2; 745 (36%) had a BMI consistent with being overweight or obese. Mean (SD) systolic blood pressure (SBP) was 118.7 (13.1) mm Hg, and 94 (5%) of the participants had SBP ≥140. Mean (SD) diastolic blood pressure (DBP) was 70.9 (11.4) mm Hg, with 119 participants (6%) having ≥90 mm Hg. A total of 136 participants had glycosuria (UA≥1+) and 120 (6%) had proteinuria (UA≥1+). In unadjusted analyses, sex (odds ratio [OR]=1.64 [confidence interval, CI 1.06-2.55]; p=0.026 men vs. women) and age (OR=1.13 per year [CI 1.01-1.26]; p=0.032) were significantly associated with proteinuria. In the analysis adjusted for age, sex, SBP, DBP, glycosuria, and BMI, age remained independently associated with higher odds for proteinuria (OR=1.14 per year [1.02-1.29]; p=0.026). Males showed a trend of higher risk compared with women (OR=1.57 [CI 1.00-2.50]; p=0.051). CONCLUSION: This education and screening pilot program in a population of college students offers unique opportunities for identification, education, and early intervention for CKD.

Racial/Ethnic Differences in Left Ventricular Structure and Function in Chronic Kidney Disease: The Chronic Renal Insufficiency Cohort.

BACKGROUND: Chronic kidney disease (CKD) is associated with increased risk of cardiovascular disease (CVD) and it is especially common among Blacks. Left ventricular hypertrophy (LVH) is an important subclinical marker of CVD, but there are limited data on racial variation in left ventricular structure and function among persons with CKD. METHODS: In a cross-sectional analysis of the Chronic Renal Insufficiency Cohort Study, we compared the prevalence of different types of left ventricular remodeling (concentric hypertrophy, eccentric hypertrophy, and concentric remodeling) by race/ethnicity. We used multinomial logistic regression to test whether race/ethnicity associated with different types of left ventricular remodeling independently of potential confounding factors. RESULTS: We identified 1,164 non-Hispanic Black and 1,155 non-Hispanic White participants who completed Year 1 visits with echocardiograms that had sufficient data to categorize left ventricular geometry type. Compared to non-Hispanic Whites, non-Hispanic Blacks had higher mean left ventricular mass index (54.7 ± 14.6 vs. 47.4 ± 12.2 g/m2.7; P < 0.0001) and prevalence of concentric LVH (45.8% vs. 24.9%). In addition to higher systolic blood pressure and treatment with >3 antihypertensive medications, Black race/ethnicity was independently associated with higher odds of concentric LVH compared to White race/ethnicity (odds ratio: 2.73; 95% confidence interval: 2.02, 3.69). CONCLUSION: In a large, diverse cohort with CKD, we found significant differences in left ventricular mass and hypertrophic morphology between non-Hispanic Blacks and Whites. Future studies will evaluate whether higher prevalence of LVH contribute to racial/ethnic disparities in cardiovascular outcomes among CKD patients.

Spanish version of the Kidney Disease Knowledge Survey (KiKS) in Peru: cross-cultural adaptation and validation. / Versión en español, del “Kidney Disease Knowledge Survey” (KiKS) en Perú: adaptación cultural y validación.

INTRODUCTION: Chronic kidney disease (CKD) affects 50 million people globally. Several studies show the importance of implementing interventions that enhance patients’ knowledge about their disease. In 2011 the Kidney Disease Knowledge Survey (KiKS) was developed: a questionnaire that assesses the specific knowledge about chronic kidney disease in pre-dialysis patients. OBJECTIVE: To translate to Spanish, culturally adapt and validate the Kidney Disease Knowledge Survey questionnaire in a population of patients with pre-dialysis chronic kidney disease. METHODS: We carried out a Spanish translation and cross-cultural adaptation of the Kidney Disease Knowledge Survey questionnaire. Subsequently, we determined its validity and reliability. We determined the validity through construct validity; and reliability by evaluating its internal consistency and its intra-observer reliability (test-retest). RESULTS: We found a good internal consistency (Kuder-Richardson = 0.85). The intra-observer reliability was measured by the intra-class correlation coefficient that yielded a value of 0.78 (95% CI: 0.5-1.0). This value indicated a good reproducibility; also, the mean difference of -1.1 test-retest SD 6.0 (p = 0.369) confirms this finding. CONCLUSION: The translated Spanish version of the Kidney Disease Knowledge Survey is acceptable and equivalent to the original version; it also has a good reliability, validity and reproducibility. Therefore, it can be used in a population of patients with pre-dialysis chronic kidney disease.

INTRODUCCIÓN: La enfermedad renal crónica afecta a 50 millones de personas en el mundo. Diversos estudios manifiestan la importancia de implementar intervenciones que mejoren el conocimiento de los pacientes respecto a su enfermedad. En 2011 se elaboró el Kidney Disease Knowledge Survey, cuestionario que valora el conocimiento específico respecto de la enfermedad renal crónica en pacientes no dializados. OBJETIVO: Realizar la traducción al español, adaptación cultural y validación del cuestionario Kidney Disease Knowledge Survey en una población de pacientes con enfermedad renal crónica en estadios pre-dialíticos. MÉTODOS: Se llevó a cabo la traducción, retraducción y adaptación cultural del cuestionario. Posteriormente, se determinó su validez y fiabilidad. La primera, mediante la validez de constructo y la segunda, valorando su consistencia interna y fiabilidad intra-observador (test-retest). RESULTADOS: Se encontró una buena consistencia interna (Kuder–Richardson=0,85). Respecto de la fiabilidad intra observador, el coeficiente de correlación intraclase obtuvo un valor de 0,78 (intervalo de confianza 95%; 0,5-1,0) que indica una buena reproducibilidad. La diferencia de medias de test-retest de -1,1 DS 6,0 (p= 0,369), confirman lo anterior. DISCUSIÓN: La versión obtenida en español del Kidney Disease Knowledge Survey es aceptable y equivalente a la versión original. Además, tiene buen grado de fiabilidad, validez y reproducibilidad. Por ende, podría ser empleada en una población de pacientes con enfermedad renal crónica en estadios pre-dialíticos.

A diagnosis of chronic kidney disease: despite fears patients want to know early.

AIMS: We elicited input from patients on their experience getting a chronic kidney disease (CKD) diagnosis to use for optimizing current CKD education interventions. METHODS: We performed structured oneon-one patient interviews. Interviews were recorded, transcribed, and coded using modified grounded theory. Participants had CKD, were not on dialysis, and were recruited from general nephrology practices. RESULTS: 49 patients enrolled from January to October 2014. Interviews revealed four major themes: 1. Reaction to diagnosis - patients described emotional reactions and subsequent behavior changes (152 statements); 2. Timing of diagnosis - patients described how they were told about their diagnosis and expectations of when a person should be told (149 statements); 3. Mediators in diagnosis delivery - patients discussed things that helped or hindered understanding and acceptance of their diagnosis (64 statements), and 4. Perceptions of diagnosis terminology - patients discussed perceptions about diagnostic terms (e.g., "chronic kidney disease") (91 statements). Cross-sectional study design and setting limit interpretation of causality and generalizability. CONCLUSIONS: Patients experience fear but prefer early diagnosis communication. More work is needed to define evidence-based guidelines for diagnosis messaging across the spectrum of care.

Predictors and Outcomes of Health-Related Quality of Life in Adults with CKD.

BACKGROUND AND OBJECTIVES: Low health-related quality of life is associated with increased mortality in patients with ESRD. However, little is known about demographic and clinical factors associated with health-related quality of life or its effect on outcomes in adults with CKD. DESIGN, SETTINGS, PARTICIPANTS, & MEASUREMENTS: Data from 3837 adult participants with mild to severe CKD enrolled in the prospective observational Chronic Renal Insufficiency Cohort and Hispanic Chronic Renal Insufficiency Cohort Studies were analyzed. Health-related quality of life was assessed at baseline with the Kidney Disease Quality of Life-36 and its five subscales: mental component summary, physical component summary, burden of kidney disease (burden), effects of kidney disease (effects), and symptoms and problems of kidney disease (symptoms). Low health-related quality of life was defined as baseline score >1 SD below the mean. Using Cox proportional hazards analysis, the relationships between low health-related quality of life and the following outcomes were examined: (1) CKD progression (50% eGFR loss or incident ESRD), (2) incident cardiovascular events, and (3) all-cause death. RESULTS: Younger age, women, low education, diabetes, vascular disease, congestive heart failure, obesity, and lower eGFR were associated with low baseline health-related quality of life (P<0.05). During a median follow-up of 6.2 years, there were 1055 CKD progression events, 841 cardiovascular events, and 694 deaths. Significantly higher crude rates of CKD progression, incident cardiovascular events, and all-cause death were observed among participants with low health-related quality of life in all subscales (P<0.05). In fully adjusted models, low physical component summary, effects, and symptoms subscales were independently associated with a higher risk of incident cardiovascular events and death, whereas low mental component summary was independently associated with a higher risk of death (P<0.05). Low health-related quality of life was not associated with CKD progression. CONCLUSIONS: Low health-related quality of life across several subscales was independently associated with a higher risk of incident cardiovascular events and death but not associated with CKD progression.