Do pre-transplant cultural factors predict health-related quality of life after kidney transplantation?

BACKGROUND: Post-transplant health-related quality of life (HRQOL) is associated with health outcomes for kidney transplant (KT) recipients. However, pretransplant predictors of improvements in post-transplant HRQOL remain incompletely understood. Namely, important pretransplant cultural factors, such as experience of discrimination, perceived racism in healthcare, or mistrust of the healthcare system, have not been examined as potential HRQOL predictors. Also, few have examined predictors of decline in HRQOL post-transplant. METHODS: Using data from a prospective cohort study, we examined HRQOL change pre- to post-transplant, and novel cultural predictors of the change. We measured physical, mental, and kidney-specific HRQOL as outcomes, and used cultural factors as predictors, controlling for demographic, clinical, psychosocial, and transplant knowledge covariates. RESULTS: Among 166 KT recipients (57% male; mean age 50.6 years; 61.4% > high school graduates; 80% non-Hispanic White), we found mental and physical, but not kidney-specific, HRQOL significantly improved post-transplant. No culturally related factors outside of medical mistrust significantly predicted change in any HRQOL outcome. Instead, demographic, knowledge, and clinical factors significantly predicted decline in each HRQOL domain: physical HRQOL-older age, more post-KT complications, higher pre-KT physical HRQOL; mental HRQOL-having less information pre-KT, greater pre-KT mental HRQOL; and, kidney-specific HRQOL-poorer kidney functioning post-KT, lower expectations for physical condition to improve, and higher pre-KT kidney-specific HRQOL. CONCLUSIONS: Instead of cultural factors, predictors of HRQOL decline included demographic, knowledge, and clinical factors. These findings are useful for identifying patient groups that may be at greater risk of poorer post-transplant outcomes, in order to target individualized support to patients.

Predicting Kidney Transplant Evaluation Non-attendance.

Non-attendance to kidney transplant evaluation (KTE) appointments is a barrier to optimal care for those with kidney failure. We examined the medical and socio-cultural factors that predict KTE non-attendance to identify opportunities for integrated medical teams to intervene. Patients scheduled for KTE between May, 2015 and June, 2018 completed an interview before their initial KTE appointment. The interview assessed various social determinants of health, including demographic (e.g., income), medical (e.g. co-morbidities), transplant knowledge, cultural (e.g., medical mistrust), and psychosocial (e.g., social support) factors. We used multiple logistic regression analysis to determine the strongest predictor of KTE non-attendance. Our sample (N = 1119) was 37% female, 76% non-Hispanic White, median age 59.4 years (IQR 49.2-67.5). Of note, 142 (13%) never attended an initial KTE clinic appointment. Being on dialysis predicted higher odds of KTE non-attendance (OR 1.76; p = .02; 64% of KTE attendees on dialysis vs. 77% of non-attendees on dialysis). Transplant and nephrology teams should consider working collaboratively with dialysis units to better coordinate care, (e.g., resources to attend appointment or outreach to emphasize the importance of transplant) adjusting the KTE referral and evaluation process to address access issues (e.g., using tele-health) and encouraging partnership with clinical psychologists to promote quality of life for those on dialysis.

High performance implementation of the hierarchical likelihood for generalized linear mixed models: an application to estimate the potassium reference range in massive electronic health records datasets.

BACKGROUND: Converting electronic health record (EHR) entries to useful clinical inferences requires one to address the poor scalability of existing implementations of Generalized Linear Mixed Models (GLMM) for repeated measures. The major computational bottleneck concerns the numerical evaluation of multivariable integrals, which even for the simplest EHR analyses may involve millions of dimensions (one for each patient). The hierarchical likelihood (h-lik) approach to GLMMs is a methodologically rigorous framework for the estimation of GLMMs that is based on the Laplace Approximation (LA), which replaces integration with numerical optimization, and thus scales very well with dimensionality. METHODS: We present a high-performance, direct implementation of the h-lik for GLMMs in the R package TMB. Using this approach, we examined the relation of repeated serum potassium measurements and survival in the Cerner Real World Data (CRWD) EHR database. Analyzing this data requires the evaluation of an integral in over 3 million dimensions, putting this problem beyond the reach of conventional approaches. We also assessed the scalability and accuracy of LA in smaller samples of 1 and 10% size of the full dataset that were analyzed via the a) original, interconnected Generalized Linear Models (iGLM), approach to h-lik, b) Adaptive Gaussian Hermite (AGH) and c) the gold standard for multivariate integration Markov Chain Monte Carlo (MCMC). RESULTS: Random effects estimates generated by the LA were within 10% of the values obtained by the iGLMs, AGH and MCMC techniques. The H-lik approach was 4-30 times faster than AGH and nearly 800 times faster than MCMC. The major clinical inferences in this problem are the establishment of the non-linear relationship between the potassium level and the risk of mortality, as well as estimates of the individual and health care facility sources of variations for mortality risk in CRWD. CONCLUSIONS: We found that the direct implementation of the h-lik offers a computationally efficient, numerically accurate approach for the analysis of extremely large, real world repeated measures data via the h-lik approach to GLMMs. The clinical inference from our analysis may guide choices of treatment thresholds for treating potassium disorders in the clinic.

Social Determinants of Health and Race Disparities in Kidney Transplant.

BACKGROUND AND OBJECTIVES: Black patients have a higher incidence of kidney failure but lower rate of deceased- and living-donor kidney transplantation compared with White patients, even after taking differences in comorbidities into account. We assessed whether social determinants of health (e.g., demographics, cultural, psychosocial, knowledge factors) could account for race differences in receiving deceased- and living-donor kidney transplantation. DESIGN, SETTING, PARTICIPANTS, & MEASUREMENTS: Via medical record review, we prospectively followed 1056 patients referred for kidney transplant (2010-2012), who completed an interview soon after kidney transplant evaluation, until their kidney transplant. We used multivariable competing risk models to estimate the cumulative incidence of receipt of any kidney transplant, deceased-donor transplant, or living-donor transplant, and the factors associated with each outcome. RESULTS: Even after accounting for social determinants of health, Black patients had a lower likelihood of kidney transplant (subdistribution hazard ratio, 0.74; 95% confidence interval, 0.55 to 0.99) and living-donor transplant (subdistribution hazard ratio, 0.49; 95% confidence interval, 0.26 to 0.95), but not deceased-donor transplant (subdistribution hazard ratio, 0.92; 95% confidence interval, 0.67 to 1.26). Black race, older age, lower income, public insurance, more comorbidities, being transplanted before changes to the Kidney Allocation System, greater religiosity, less social support, less transplant knowledge, and fewer learning activities were each associated with a lower probability of any kidney transplant. Older age, more comorbidities, being transplanted before changes to the Kidney Allocation System, greater religiosity, less social support, and fewer learning activities were each associated with a lower probability of deceased-donor transplant. Black race, older age, lower income, public insurance, higher body mass index, dialysis before kidney transplant, not presenting with a potential living donor, religious objection to living-donor transplant, and less transplant knowledge were each associated with a lower probability of living-donor transplant. CONCLUSIONS: Race and social determinants of health are associated with the likelihood of undergoing kidney transplant.

Does Racial Disparity in Kidney Transplant Waitlisting Persist After Accounting for Social Determinants of Health?

BACKGROUND: African Americans (AA) have lower rates of kidney transplantation (KT) compared with Whites (WH), even after adjusting for demographic and medical factors. In this study, we examined whether the racial disparity in KT waitlisting persists after adjusting for social determinants of health (eg, cultural, psychosocial, and knowledge). METHODS: We prospectively followed a cohort of 1055 patients who were evaluated for KT between 3 of 10 to 10 of 12 and followed through 8 of 18. Participants completed a semistructured telephone interview shortly after their first KT evaluation appointment. We used the Wilcoxon rank-sum and Pearson chi-square tests to examine race differences in the baseline characteristics. We then assessed racial differences in the probability of waitlisting while accounting for all predictors using cumulative incidence curves and Fine and Gray proportional subdistribution hazards models. RESULTS: There were significant differences in the baseline characteristics between non-Hispanic AA and non-Hispanic WH. AA were 25% less likely (95% confidence interval, 0.60-0.96) to be waitlisted than WH even after adjusting for medical factors and social determinants of health. In addition, being older, having lower income, public insurance, more comorbidities, and being on dialysis decreased the probability of waitlisting while having more social support and transplant knowledge increased the probability of waitlisting. CONCLUSIONS: Racial disparity in kidney transplant waitlisting persisted even after adjusting for medical factors and social determinants of health, suggesting the need to identify novel factors that impact racial disparity in transplant waitlisting. Developing interventions targeting cultural and psychosocial factors may enhance equity in access to transplantation.

Disparities in Electronic Health Record Patient Portal Use in Nephrology Clinics.

BACKGROUND AND OBJECTIVES: Electronic health record (EHR) patient portals allow individuals to access their medical information with the intent of patient empowerment. However, little is known about portal use in nephrology patients. We addressed this gap by characterizing adoption of an EHR portal, assessing secular trends, and examining the association of portal adoption and BP control (<140/90 mmHg). DESIGN, SETTING, PARTICIPANTS, & MEASUREMENTS: Patients seen between January 1, 2010, and December 31, 2012, at any of four university-affiliated nephrology offices who had at least one additional nephrology follow-up visit before June 30, 2013, were included. Sociodemographic characteristics, comorbidities, clinical measurements, and office visits were abstracted from the EHR. Neighborhood median household income was obtained from the American Community Survey 2012. RESULTS: Of 2803 patients, 1098 (39%) accessed the portal. Over 87% of users reviewed laboratory results, 85% reviewed their medical information (e.g., medical history), 85% reviewed or altered appointments, 77% reviewed medications, 65% requested medication refills, and 31% requested medical advice from their renal provider. In adjusted models, older age, African-American race (odds ratio [OR], 0.50; 95% confidence interval [95% CI], 0.39 to 0.64), Medicaid status (OR, 0.53; 95% CI, 0.36 to 0.77), and lower neighborhood median household income were associated with not accessing the portal. Portal adoption increased over time (2011 versus 2010: OR, 1.38 [95% CI, 1.09 to 1.75]; 2012 versus 2010: OR, 1.95 [95% CI, 1.44 to 2.64]). Portal adoption was correlated with BP control in patients with a diagnosis of hypertension; however, in the fully adjusted model this was somewhat attenuated and no longer statistically significant (OR, 1.11; 95% CI, 0.99 to 1.24). CONCLUSION: While portal adoption appears to be increasing, greater attention is needed to understand why vulnerable populations do not access it. Future research should examine barriers to the use of e-health technologies in underserved patients with CKD, interventions to address them, and their potential to improve outcomes.

The hazards of the changing hazard of dialysis modalities.

The impact of the dialysis modality on patient survival has received considerable epidemiological attention, with most studies suggesting an early benefit favoring peritoneal dialysis over hemodialysis. Kumar et al. report the relative outcomes of the two modalities in incident patients followed by an accountable care organization. Using advanced statistical techniques for non-proportional hazards survival models, the authors corroborate the early benefit of peritoneal dialysis for the first 3 years and equivalent outcomes thereafter.

Ecological momentary assessment of fatigue, sleepiness, and exhaustion in ESKD.

BACKGROUND: Many patients on maintenance dialysis experience significant sleepiness and fatigue. However, the influence of the hemodialysis (HD) day and circadian rhythms on patients' symptoms have not been well characterized. We sought to use ecological momentary assessment to evaluate day-to-day and diurnal variability of fatigue, sleepiness, exhaustion and related symptoms in thrice-weekly maintenance HD patients. METHODS: Subjects used a modified cellular phone to access an interactive voice response system that administered the Daytime Insomnia Symptom Scale (DISS). The DISS assessed subjective vitality, mood, and alertness through 19 questions using 7- point Likert scales. Subjects completed the DISS 4 times daily for 7 consecutive days. Factor analysis was conducted and a mean composite score of fatigue-sleepiness-exhaustion was created. Linear mixed regression models (LMM) were used to examine the association of time of day, dialysis day and fatigue, sleepiness, and exhaustion composite scores. RESULTS: The 55 participants completed 1,252 of 1,540 (81%) possible assessments over the 7 day period. Multiple symptoms related to mood (e.g., feeling sad, feeling tense), cognition (e.g., difficulty concentrating), and fatigue (e.g., exhaustion, feeling sleepy) demonstrated significant daily and diurnal variation, with higher overall symptom scores noted on hemodialysis days and later in the day. In factor analysis, 4 factors explained the majority of the observed variance for DISS symptoms. Fatigue, sleepiness, and exhaustion loaded onto the same factor and were highly intercorrelated. In LMM, mean composite fatigue-sleepiness-exhaustion scores were associated with dialysis day (coefficient and 95% confidence interval [CI] 0.21 [0.02 - 0.39]) and time of day (coefficient and 95% CI 0.33 [0.25 - 0.41]. Observed associations were minimally affected by adjustment for demographics and common confounders. CONCLUSIONS: Maintenance HD patients experience fatigue-sleepiness-exhaustion symptoms that demonstrate significant daily and diurnal variation. The variability in symptoms may contribute to poor symptom awareness by providers and greater misclassification bias of fatigue related symptoms in clinical studies.

Predictors of health utility among 60-day survivors of acute kidney injury in the Veterans Affairs/National Institutes of Health Acute Renal Failure Trial Network Study.

BACKGROUND AND OBJECTIVES: Health-related quality of life (HRQOL) after acute kidney injury (AKI) is an area of great importance to patients. It was hypothesized that HRQOL after AKI would relate to intensity of dialysis during AKI and dialysis dependence at follow-up. DESIGN, SETTING, PARTICIPANTS, & MEASUREMENTS: The Veterans Affairs/National Institutes of Health Acute Renal Failure Trial Network Study was a multicenter, prospective, randomized trial of intensive versus less intensive renal replacement therapy in critically ill patients with AKI. Of 1124 participants, 415 survived at least 60 days and completed the Health Utilities Index (HUI), which measures 8 health attributes and calculates an overall HRQOL score, also called a utility score. How strongly pre-intensive care unit (ICU) health, severity of illness, hospital course, intensity of dialysis, and outcome were associated with 60-day HUI scores was assessed, after adjustment for demographics. RESULTS: The overall HUI score was 0.40 +/- 0.37, indicating severely compromised health utility and was associated with only admission from home and hospital and ICU length of stay (LOS). Ambulation was better among those with a shorter hospital and ICU LOS. Better cognition was associated with dialysis independence and with fewer comorbid chronic illnesses. Emotion was associated with only hospital LOS. Pain was associated with ICU LOS. CONCLUSIONS: Health utility was low in this cohort of patients after AKI, and intensity of dialysis did not affect subsequent health utility. The effects of a lengthy hospitalization generally outweighed the effects of delayed recovery of kidney function on HRQOL after AKI.

Health-related quality of life outcomes in chronic kidney disease.

PURPOSE OF REVIEW: Patients with chronic kidney disease (CKD) endure compromised health-related quality of life (HRQOL). Although the link between HRQOL and increased mortality in patients with end-stage renal disease (ESRD) is well documented, less is known about the relationship between CKD and HRQOL. This article reviews the recent evidence on HRQOL, its correlates and proposed intervention strategies to improve HRQOL in CKD. RECENT FINDINGS: A growing body of literature indicates that various comorbid conditions related to CKD play a substantial role in impaired HRQOL in CKD. Hypertension, both a cause and complication of CKD, negatively affects HRQOL due to associated comorbidities, side effects from antihypertensive medications and awareness of the diagnosis. Anemia has been associated with HRQOL, but concerns about the safety of erythropoietin-stimulating agents (ESAs) have led to more conservative anemia treatment. Frailty, symptom burden and depression are also major contributory factors to HRQOL in CKD. SUMMARY: Certain determinants of HRQOL in CKD, namely anemia and depression, are treatable. Early identification and correction may improve overall well being of patients. Clinical trials are required to demonstrate whether treatment interventions benefit HRQOL in this high-risk population. Furthermore, whether integration of HRQOL assessment into routine clinical practice will improve HRQOL outcomes remains to be determined.

Symptom burden, depression, and quality of life in chronic and end-stage kidney disease.

BACKGROUND AND OBJECTIVES: While many patients with end-stage renal disease (ESRD) have impaired physical and psychologic well-being, less is known about these health domains in patients with advanced chronic kidney disease (CKD). The authors sought to compare symptoms, depression, and quality of life in patients with ESRD and those with CKD. DESIGN, SETTING, PARTICIPANTS, & MEASUREMENTS: Patients with ESRD and subjects with advanced CKD were enrolled. Patients' symptoms, depression, and quality of life were assessed using the Dialysis Symptom Index (DSI), Patient Health Questionnaire-9 (PHQ-9), and Short Form 36 (SF-36), respectively, and these health domains were compared between patient groups. RESULTS: Ninety patients with ESRD and 87 with CKD were enrolled. There were no differences in the overall number of symptoms or in the total DSI symptom-severity score. Median scores on the PHQ-9 were similar, as was the proportion of patients with PHQ-9 scores >9. SF-36 Physical Component Summary scores were comparable, as were SF-36 Mental Component Summary scores. CONCLUSIONS: The burden of symptoms, prevalence of depression, and low quality of life are comparable in patients with ESRD and advanced CKD. Given the widely recognized impairments in these domains in ESRD, findings of this study underscore the substantial decrements in the physical and psychologic well-being of patients with CKD.

Assessment of health-related quality of life among patients with chronic kidney disease.

The health-related quality of life (HRQOL) of patients with chronic kidney disease influences the timing of the initiation of dialysis, whether they continue to work with progressive kidney failure and whether they maintain an active role in the home and community. The importance of HRQOL to the goals of therapy has been widely documented for dialysis patients who chose not to receive a kidney transplant and those with substantial comorbidities who are not candidates for kidney transplantation, patients who are confined to the chronic rigors of maintenance dialysis. The usual conceptualization of HRQOL has been based on the World Health Organization's definition of QOL as a complete state of physical, mental, and social well-being and not merely an absence of disease in infirmity. This conceptual model has limitations because few standard HRQOL questionnaires assess satisfaction with family despite being a critical domain to patients. Measuring and monitoring HRQOL in CKD patients can be achieved with the widespread implementation of facile HRQOL assessment. The importance of HRQOL has been increasingly recognized by health care payers, health care providers, regulatory agencies, and researchers, both within and outside the renal community. Despite the apparent need and potential benefits of HRQOL assessments in dialysis patients, there are limitations to the translation of such assessments from the research domain into the clinical arena such as the length of questionnaires and display of the information at the point of care. These limitations can be addressed through the development of computer-adaptive testing (CAT). CAT permits the response of the patient to inform the selection of the next question. In this way, the length of HRQOL questionnaires may be dramatically shortened while not sacrificing the sensitivity or reliability of a longer instrument. The routine use of HRQOL assessments in the care of patients with CKD represents an important opportunity for the nephrologist to better incorporate the values and concerns of the patient into their care.