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Patients with CKD and ESRD are vulnerable to increased mortality rates and other poor outcomes. Among those with ESRD, their health-related quality of life (HRQOL) is shown little to no improvement as they undergo treatments such as dialysis and providers concurrently manage other health issues that complicate their already vulnerable state. This review synthesizes evidence demonstrating that a focus on measuring and monitoring patient-reported outcomes (PRO) such as pain and depression can improve HRQOL. Patient-centered care has the potential to create an efficient way for clinicians to address specific challenges facing patients. While there is an emerging literature assessing the use of PROs in kidney research, by examining relevant research in other disciplines it is possible to generate better ways to use PROs in this high-risk population. Electronic health records as well as various other electronic methods of communication between the clinician and patient may serve to accelerate the trajectory toward patient-centered care using PROs.

Background: Uremic pruritus (UP) and restless legs syndrome (RLS) are highly prevalent complaints among patients with end-stage renal disease (ESRD) undergoing chronic dialysis. These chronic troublesome symptoms lead to a significant decrease in quality of life (QOL) and increase in mortality rate. Despite their distressing characteristics, these symptoms usually remain under-recognized by healthcare providers. Therefore, careful history intake, and stepwise treatment are essential. Numerous pharmacological and non-pharmacological treatments have been demonstrated to help in controlling these 2 conditions. Summary: In this review, we discuss the latest findings regarding UP and RLS among ESRD patients on maintenance dialysis. We also examine different treatment options in this group of patients. The majority of these patients do not have the opportunity to receive a kidney transplant and need other treatments for these burdensome symptoms in order to improve their QOL and prognosis. Key Messages: UP and RLS are common but underdiagnosed conditions in ESRD patients on maintenance dialysis that are related to a decline in patients’ QOL and poor prognosis. The pathophysiology of these conditions remains not well understood. Therefore, controversies still exist on treatment options. Treating these conditions provides an opportunity to improve the health-related QOL and outcomes of dialysis patients.

Background: Limited evidence from small-scale studies, mainly involving end-stage renal disease (ESRD) patients, suggests that kidney transplantation may improve cognitive function. We examined changes in cognitive function after a kidney transplant and its association with survival in advanced chronic kidney disease (CKD)/ESRD patients. Methods: In a prospective study design, cognitive performance of 90 patients (50.6 ± 13.1 years, 66.7% men, 27.8% blacks, 76% CKD stages 4-5) was assessed at the respective patients' residences using established neurocognitive tests. Results: Among the 90 patients, 44 received a kidney transplant (KTx group) while 46 did not (no-KTx group). After a mean follow-up of ∼19 months, there was no significant change in scores for majority of cognitive tests in either group. Older age, but not diabetes or renal function status (CKD vs. ESRD), was a determinant of poor follow-up cognitive performance. Additionally, poor attention/psychomotor speed and executive performance (as measured by Trails A and Stroop test, respectively) was associated with higher mortality over a mean follow-up of 4.7 years, even after adjustment for age, sex, diabetes, CKD or ESRD status and kidney transplant status. Conclusion: Overall, cognitive function does not significantly improve after kidney transplant or significantly decline in non-transplanted, advanced CKD/ESRD patients. Poor attention, psychomotor speed and executive performance independent of transplant status were associated with higher mortality over time.

Background: End-stage renal disease (ESRD) patients have poor health-related quality of life (HRQOL) comparing to general population and comparable HRQOL to patients with other major chronic diseases. Poor HRQOL is associated with shorter survival. There is a limited threshold to which dialysis dose and parameters management can improve HRQOL in ESRD patients. Numerous studies have sought to find interventions to improve HRQOL. This article is to review the symptoms associated with poor HRQOL and how frequent the quality of life (QOL) should be evaluated to improve the outcome. Summary: It is required by the Center for Medicare and Medicaid Services to evaluate HRQOL of dialysis patients annually. KDIGO recommends the symptoms to be assessed regularly and the treatment is redirected toward a patient-centered care model. Studies have shown that measuring patient-reported outcomes frequently, from 4 times a day to every 3-6 months, without intervention did not improve the HRQOL significantly. Appropriate intervention of the symptoms may improve the quality of life (QOL). Studies in oncology have also showed a similar result. The commonly used tools to evaluate the HRQOL in dialysis patients take up to 30 min for completion. Therefore, frequent assessment of all the symptoms can provide more burden than benefit to the patients. In addition to the annual HRQOL measurements, more frequent evaluation of targeted symptoms can be helpful. For appropriate intervention of the symptoms, effective communication between providers, as well as a multidisciplinary approach, is essential to improve HRQOL and outcomes in dialysis patients. Key Messages: Measurement of patient-reported outcomes may provide an opportunity to improve outcomes in ESRD. The frequent measurement of symptoms and QOL may be burdensome. Consider targeted measurement of symptoms to complement HRQOL measurement. Improved communication and the use of a multidisciplinary team provide mechanisms to improve HRQOL in ESRD.

Background: Fatigue is an important symptom to patients with advanced chronic kidney disease (CKD). The aim of this study is to examine the prevalence and severity of fatigue among non-dialysis-dependent CKD and end-stage renal disease (ESRD) patients, to examine the association of fatigue with subjective and objective sleep quality, and to identify other modifiable factors associated with fatigue. Methods: A cross-sectional survey of 87 non-dialysis-dependent CKD (eGFR ≤45 ml/min/1.73 m2) and 86 ESRD patients was done using the Functional Assessment of Chronic Illness Therapy - Fatigue (FACIT-F) and 36-Item Short-Form (SF-36) vitality scale. Higher FACIT-F score denoted less fatigue. Objective sleep was assessed using in-home polysomnography. Predictors of fatigue were determined using a linear regression model. Results: The mean FACIT-F score among all participants was 34.5 ± 11.0. Mean scores were similar among CKD and ESRD groups (34.25 ± 11.28 vs. 34.73 ± 10.86; p = 0.73). On univariate analyses, patients with higher levels of fatigue were more likely to have cardiovascular disease, benzodiazepine use, depressive symptoms, and slightly lower hemoglobin and serum albumin levels. There was no significant association between severity of sleep apnea and level of fatigue (Apnea Hypopnea Index 20.1 ± 27.6 vs. 20.3 ± 22.0; p = 0.69). Presence of cardiovascular disease, low serum albumin, depressive symptoms, poor subjective sleep quality, excessive daytime sleepiness and restless legs syndrome were independently associated with greater fatigue in multivariable regression models. The FACIT-F score correlated closely with the SF-36 vitality score (r = 0.81, p < 0.0001). Conclusions: Patients with advanced CKD and ESRD experience profound fatigue. Depressive symptoms, restless legs syndrome, excessive daytime sleepiness, and low albumin levels may provide targets for interventions to improve fatigue in patients with advanced CKD.

Background: End-stage renal disease patients experience significant impairments in health-related quality of life (HRQOL). Testing various strategies to improve patient HRQOL in multicenter clinical trials, such as the Frequent Hemodialysis Network (FHN) trials is vitally important. Aims: Theaim of this paper is to describe the design and conduct of HRQOL and patient-reported outcomes (PRO) assessment in the FHN trials. Methods: In the FHN trials, HRQOL was examined as a multidimensional concept, and the SF-36 RAND Physical Health Composite score was one of the co-primary outcomes. The instruments completed to assess HRQOL included the Medical Outcomes Study Short Form SF-36, Health Utilities Index 3, Sleep Problems Index, Beck Depression Inventory and feeling thermometer. These instruments have been shown to have high reliability, validity and responsiveness to change in the end-stage renal disease population. Additional items evaluating PRO including sexual function, time to recovery after dialysis and patients’ self-perceived burden to caregiver were also assessed. All questionnaires were administered by trained interviewers using computer-assisted telephone interviewing to ensure blinding and minimizing selection bias. Interim analysis reveals that these instruments can be used to collect a comprehensive set of HRQOL measures with minimal patient burden. Conclusions: Accurate measurement of HRQOL and PRO can help us test whether hemodialysis interventions improve the health and well-being of this compromised patient population. We have shown that a comprehensive set of HRQOL measures can be centrally collected through telephone interviews in a blinded fashion, in a way that is well tolerated with minimum respondent burden.

Background: Poor sleep quality is a common, persistent, and important problem to patients with end-stage renal disease (ESRD). This report examines whether sleep quality is associated with dialysis treatment factors and other modifiable clinical factors in a large group of hemodialysis (HD) patients. Methods: Cross-sectional analyses were conducted on baseline data collected from participants in the Frequent Hemodialysis Network trials. Sleep quality was measured using the Medical Outcomes Study Sleep Problems Index II (SPI II), a 9-item measure of sleep quality with higher scores reflecting poorer sleep quality. Results: The participants had an age of 51.2 ± 13.6 years, 61% were male, 38% were black, and 42% had diabetes. Higher pre-dialysis serum phosphorus (per 0.5 mg/ml) (OR 0.91; 95% CI 0.85, 0.96) and depression (OR 0.16; 95% CI 0.10, 0.25) were independently associated with decrements in sleep quality. There was also a difference in time to recovery from dialysis for the fourth versus the first SPI II quartile (5.1 h; p < 0.0001). Conclusion: These findings underscore the link between sleep and daytime function and suggest that improving sleep may provide an opportunity to improve outcomes in ESRD. Whether sleep problems may be improved by reduction of serum phosphorus or treatment of depression in the HD population merits further investigation.

Background/Aims: Depression is highly prevalent in individuals with advanced kidney disease, but is less well studied in individuals with milder disease. We evaluated the association between kidney function and depression in the Health, Aging and Body Composition (Health ABC) study. Methods: The study enrolled 3,075 community-dwelling black and white adults aged 70–79 years. Kidney function was measured by cystatin C and estimated glomerular filtration rate (eGFR). The main outcome was incident treated depression. Results: 52% of participants had low (≤1.0), 33% intermediate (>1–1.25) and 15% high cystatin C (>1.25). Kidney function and depression were not associated at baseline. Of 2,731 nondepressed participants at baseline, 95 developed incident depression during follow-up. In unadjusted Cox proportional hazard models, hazard ratios (HR) for incident depression were 1.89 (95% confidence interval (CI) 1.21–2.97) for the intermediate and 2.17 (CI 1.24–3.79) for the high cystatin C group. Intermediate (HR = 1.84) and high (HR = 2.1) serum cystatin C remained associated with incident depression in adjusted models. Chronic kidney disease, defined by an eGFR 2, was not associated with depression. Conclusion: Participants with higher cystatin C had an increased likelihood of developing treated depression. Future studies should target this high-risk group.

Background/Aims: Little is known about the association of chronic kidney disease (CKD) with sleep quality, mood, and alertness. In this report, we assessed these symptoms among patients with advanced CKD (stages 4–5) and those with end-stage renal disease (ESRD) and compared them to healthy controls without known kidney disease. Methods: Patients were recruited from local dialysis units, outpatient nephrology clinics and the Thomas E. Starzl Transplant Institute. Healthy control subjects matched for age, gender and race were drawn from an archival database. Daily symptoms of sleep quality, mood, and alertness were assessed by visual analogue scales of the Pittsburgh Sleep Diary. Health-related quality of life was assessed by the Short Form-36 instrument. Results: Sixty-nine dialysis patients and 23patients with advanced CKD demonstrated worse scores in sleep quality, mood, and alertness (p < 0.001) than controls. In adjusted analyses, European-American race, dialysis dependency, younger age, and physical performance SF-36 components were significantly associated with poor sleep quality, mood and alertness (p < 0.05). The dialysis population demonstrated higher day-to-day variability in scores than either the advanced CKD patients or the controls. Conclusion: Advanced CKD and dialysis dependency are associated with impaired and highly variable sleep quality, mood, and alertness.