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Rationale & Objective: Recent evidence suggests people with nondialysis chronic kidney disease (ND-CKD) experience a substantial burden of symptoms, but informative large-scale studies have been scarce. We assessed the prevalence of symptoms and the association of overall symptom burden with quality of life in patients with moderate to severe CKD., Study Design: Cross-sectional study., Setting & Participants: 4,430 patients with ND-CKD stages 3-5 enrolled in the Chronic Kidney Disease Outcomes and Practice Patterns Study (CKDopps) in Brazil, France, and the United States between 2013 and 2021., Exposure: 13 individual patient-reported symptoms from the Kidney Disease Quality of Life Short Form (KDQOL-SF) questionnaire and an overall symptom burden score (low, intermediate, and high)., Outcome: Physical and mental component summary scores (PCS and MCS) of the KDQOL-SF., Analytical Approach: Adjusted prevalence ratios and generalized estimating equations., Results: Patients (mean age, 68 years; 40% women; mean baseline estimated glomerular filtration rate [eGFR], 30mL/min/1.73m 2 ) were very much to extremely bothered by numerous symptoms ("soreness in muscles," 23%; "washed out or drained," 21%; "cramps, shortness of breath, dry skin, diminished sex life, or numbness in hands or feet," 14%-17%). The adjusted prevalences of "cramps," "washed out or drained," "lack of appetite," "nausea/upset stomach," and "sex life" were greater with more severe CKD and in women (except for "sex life"). A high overall symptom burden was more common in women, in France, and in patients with severe albuminuria and various comorbidities, but not with lower eGFR. The PCS and MCS scores were 13.4 and 7.7 points lower, respectively, for high versus low overall symptom burden., Limitations: Generalizability limited to patients under nephrology care, residual confounding, and inaccurate Brazilian translation of some symptoms., Conclusions: The high symptom burden observed in this large cohort of ND-CKD patients across 3 diverse countries and its strong association with poorer health-related quality of life should inform clinical management of and clinical research in CKD., Plain-Language Summary: Little is known about symptoms in patients with non-dialysis-dependent chronic kidney disease (ND-CKD). In the Chronic Kidney Disease Outcomes and Practice Patterns Study, which enrolled 4,430 patients with CKD stages 3-5 in Brazil, France, and the United States, patients most often reported soreness in muscles, feeling washed out or drained, cramps, shortness of breath, dry skin, altered sex life, and numbness in hands or feet. Cramps, feeling washed out or drained, lack of appetite, and nausea were more often reported at lower levels of kidney function. The overall symptom burden was higher in women than men, in French than in Brazilian or US patients, and in those with severe albuminuria. The higher the symptom burden, the lower were the physical and mental health quality of life scores. The high symptom burden observed in this large cohort of ND-CKD patients across 3 diverse countries and its strong association with poorer health-related quality of life should inform clinical management of and clinical research in CKD., (Copyright © 2024 National Kidney Foundation, Inc. Published by Elsevier Inc. All rights reserved.)

Background: Spiritual well-being (SWB), an individual's understanding of the meaning and purpose of life, may help patients with chronic or terminal illnesses cope with their diseases. This study aimed to assess SWB in patients on peritoneal dialysis (PD), as well as its relationship with patient characteristics and patient-reported outcomes (PRO)., Methods: The data were obtained from questionnaires that formed part of the PD Outcomes and Practice Patterns Study (PDOPPS). Measures used in this study were SWB scores derived from the WHO quality of life, spirituality, religiousness and personal beliefs (WHOQOL-SRPB) tool including 32 items from eight facets; physical (PCS) and mental component summary (MCS) scores of the 12-Item Short-Form Health Survey (SF-12), Center of Epidemiologic Studies Depression Scale-10 (CES-D-10) scores, burden of kidney disease scores and functional status scores., Results: Overall, 529 out of 848 participants (62%) completely responded to the questionnaires and were included in the analysis. Over two-thirds of PD patients (70%) had moderate or higher SWB scores. The SWB scores were significantly lower in patients with age >65 years and unemployed status. SWB scores positively correlated with higher PCS, MCS, burden of kidney disease scores and functional status scores, while negatively correlated with depression scores by CES-D-10 scale. Patients who reported significant depressive symptoms (CES-D-10 score ≥ 10) had significantly lower SWB scores., Conclusion: Better SWB was significantly associated with better health-related QOL (HRQOL) and the absence of depressive symptoms. SWB may be an essential consideration in the delivery of high-quality PD., (© 2022 Asian Pacific Society of Nephrology.)

Rationale & Objective: Individuals faced with decisions regarding kidney replacement therapy options need information on how dialysis treatments might affect daily activities and quality of life, and what factors might influence the evolution over time of the impact of dialysis on daily activities and quality of life., Study Design: Observational cohort study., Setting & Participants: 7,771 hemodialysis (HD) and peritoneal dialysis (PD) participants from 6 countries participating in the Peritoneal and Dialysis Outcomes and Practice Patterns Studies (PDOPPS/DOPPS)., Predictors: Patient-reported functional status (based on daily living activities), country, demographic and clinical characteristics, and comorbidities., Outcome: Employment status and patient-reported outcomes (PROs) including Kidney Disease Quality of Life (KDQOL) instrument physical and mental component summary scores (PCS, MCS), kidney disease burden score, and depression symptoms (Center for Epidemiologic Studies Depression Scale [CES-D] score > 10)., Analytical Approach: Linear regression (PCS, MCS, kidney disease burden score), logistic regression (depression symptoms), adjusted for predictors plus 12 additional comorbidities., Results: In both dialysis modalities, patients in Japan had the highest PCS and employment (55% for HD and 68% for PD), whereas those in the United States had the highest MCS score, lowest kidney disease burden, and lowest employment (20% in HD and 42% in PD). After covariate adjustment, the association of age, sex, dialysis vintage, diabetes, and functional status with PROs was similar in both modalities, with women having lower PCS and kidney disease burden scores. Lower functional status (score <11) was strongly associated with lower PCS and MCS scores, a much greater burden of kidney disease, and greater likelihood of depression symptoms (CES-D, >10). The median change in KDQOL-based PROs was negligible over 1 year in participants who completed at least 2 annual questionnaires., Limitations: Selection bias due to incomplete survey responses. Generalizability was limited to the dialysis populations of the included countries., Conclusions: Variation exists in quality of life, burden of kidney disease, and depression across countries but did not appreciably change over time. Functional status remained one of the strongest predictors of all PROs. Routine assessment of functional status may provide valuable insights for patients and providers in anticipating outcomes and support needs for patients receiving either PD or HD., (Copyright © 2021. Published by Elsevier Inc.)

The goal of care of the peritoneal dialysis (PD) patient should be directed at adjusting therapy to maximize the patient's health-related quality of life (HRQOL). Incorporating the routine assessments of HRQOL into the care of PD patients is important and should serve as an essential marker of the adequacy of dialysis and help the dialysis staff design the optimal treatment regimen for each patient. HRQOL is best assessed with patient-reported outcome measures (PROMs). How best to incorporate these PROMs into the routine care of the PD patient is not clear in terms of the best instruments to use, frequency of measurements, patient acceptability, and how to translate these assessments into improvements in patient care. Nevertheless, incorporating routine assessments of HRQOL into the care of PD patients is essential if the dialysis team is to provide optimal care; it is an area that is receiving increasing attention and is ripe for further study and investigation.

The treatment of anemia with erythropoietic-stimulating agents is now part of the routine care of patients with CKD with guidelines for anemia management carefully outlined by Kidney Disease Improving Global Outcomes. The treatment of anemia impacts the health-related quality of life of CKD patients, primarily affecting the domains of energy/vitality and physical functioning. Improvements in these domains occur, in general, most noticeably when hemoglobin levels are raised from below 9 g/dL to the 10-12 range, with limited improvements occurring when hemoglobin levels are increased above 12 g/dL. Importantly, individual patient responses to anemia treatment vary depending on a variety of factors and it is important to assess the impact of treatment on each patient, particularly as nephrology care moves to a patient-centered care model., (Copyright © 2019 National Kidney Foundation, Inc. Published by Elsevier Inc. All rights reserved.)

Background: Anemia is a common and debilitating manifestation of chronic kidney disease (CKD). Data from two clinical trials in patients with anemia of CKD were used to assess the measurement properties of the Medical Outcomes Survey Short Form-36 version 2 (hereafter SF-36) and the Functional Assessment of Cancer Therapy-Anemia (FACT-An). The Vitality and Physical functioning domains of the SF-36 and the FACT-An Total, Fatigue and Anemia subscales were identified as domains relevant to CKD-associated anemia., Methods: A total of 204 patients aged 18-80 years were included in the analyses that included internal consistency (Cronbach's alpha), test-retest reliability (intraclass correlation coefficients [ICCs]), convergent and known-groups validity, responsiveness, and estimates of important change., Results: Both the SF-36 and the FACT-An had strong psychometric properties with high internal consistency (Cronbach's alpha: 0.69-0.93 and 0.79-0.95), and test-retest reliability (ICCs: 0.64-0.83 and 0.72-0.88). Convergent validity, measured by correlation coefficients between similar concepts in SF-36 and FACT-An, ranged from 0.52 to 0.77. Correlations with hemoglobin (Hb) levels were modest at baseline; by Week 9, the correlations with Hb were somewhat higher, r = 0.23 (p < 0.05) for SF-36 Vitality, r = 0.22 (p < 0.05) for FACT-An Total, r = 0.26 (p < 0.001) for FACT-Fatigue and r = 0.22 (p < 0.01) for Anemia. Correlations with Hb at Week 13/17 were r = 0.28 (p < 0.001) for SF-36 Vitality and r = 0.25 (p < 0.05) for Role Physical; FACT-An Total correlation was r = 0.33 (p < 0.0001), Anemia was r = 0.28 (p < 0.001), and Fatigue was r = 0.30 (p < 0.001). The SF-36 domains and Component Summary scores (p < 0.05-p < 0.0001) demonstrated ability to detect change. For the FACT-An, significant differences (p < 0.05-p < 0.0001) were observed between responder and non-responder change scores: important change score estimates ranged from 2 to 4 for Vitality and 2-3 for Physical functioning. Important change scores were also estimated for the FACT-An Total score (6-9), the Anemia (3-5), and Fatigue subscale (2-4)., Conclusions: Both the SF-36 Vitality and Physical function scales and the FACT-An Total, Fatigue and Anemia scales, are reliable and valid measures for assessing health-related quality of life in anemia associated with CKD.

Background: Cross-sectional health-related quality of life (HR-QOL) measures are associated with mortality in hemodialysis (HD) patients. The impact of changes in HR-QOL on outcomes remains unclear. We describe the association of prior changes in HR-QOL with subsequent mortality among HD patients., Methods: A total of 13 784 patients in the Dialysis Outcomes and Practice Patterns Study had more than one measurement of HR-QOL. The impact of changes between two measurements of the physical (PCS) and mental (MCS) component summary scores of the SF-12 on mortality was estimated with Cox regression., Results: Mean age was 62 years (standard deviation: 14 years); 59% were male and 32% diabetic. Median time between HR-QOL measurements was 12 months [interquartile range (IQR): 11, 14]. Median initial PCS and MCS scores were 37.5 (IQR: 29.4, 46.2) and 46.4 (IQR: 37.2, 54.9); median changes in PCS and MCS scores were -0.2 (IQR: -5.5, 4.7) and -0.1 (IQR: -6.8, 5.9), respectively. The adjusted hazard ratio (HR) for a 5-point decline in HR-QOL score was 1.09 [95% confidence interval (CI): 1.06-1.12] for PCS and 1.05 (95% CI: 1.03-1.08) for MCS. Adjusting for the second QOL score, the change was not associated with mortality: HR = 1.01 (95% CI: 0.98-1.05) for delta PCS and 1.01 (95% CI: 0.98-1.03) for delta MCS. Categorizing the first and second scores as predictors, only the second PCS or MCS score was associated with mortality., Conclusions: In our study, only the most recent HR-QOL score was associated with mortality. Hence, the predictive power of a measurement of HR-QOL is not affected by changes in HR-QOL prior to that measurement; more frequent HR-QOL measurements are needed to improve the prediction of outcomes in HD. Further studies are needed to determine the optimal frequency and appropriate instrument to be used for serial measurements., (© The Author 2016. Published by Oxford University Press on behalf of ERA-EDTA. All rights reserved.)

Most patients with end-stage kidney disease value their health-related quality of life (HRQoL) and want to know how it will be affected by their dialysis modality. We extended the findings of two prior clinical trial reports to estimate the effects of frequent compared to conventional hemodialysis on additional measures of HRQoL. The Daily Trial randomly assigned 245 patients to receive frequent (six times per week) or conventional (three times per week) in-center hemodialysis. The Nocturnal Trial randomly assigned 87 patients to receive frequent nocturnal (six times per week) or conventional (three times per week) home hemodialysis. All patients were on conventional hemodialysis prior to randomization, with an average feeling thermometer score of 70 to 75 (a visual analog scale from 0 to 100 where 100 is perfect health), an average general health scale score of 40 to 47 (a score from 0 to 100 where 100 is perfect health), and an average dialysis session recovery time of 2 to 3 hours. Outcomes are reported as the between-treatment group differences in one-year change in HRQoL measures and analyzed using linear mixed effects models. After one year in the Daily Trial, patients assigned to frequent in-center hemodialysis reported a higher feeling thermometer score, better general health, and a shorter recovery time after a dialysis session compared to standard thrice-weekly dialysis. After one year in the Nocturnal Trial, patients assigned to frequent home hemodialysis also reported a shorter recovery time after a dialysis session, but no statistical difference in their feeling thermometer or general health scores compared to standard home dialysis schedules. Thus, patients receiving day or nocturnal hemodialysis on average recovered approximately one hour earlier from a frequent compared to conventional hemodialysis session. Patients treated in an in-center dialysis facility reported better HRQoL with frequent compared to conventional hemodialysis., (Copyright © 2017 International Society of Nephrology. All rights reserved.)

Diminished health-related quality of life (HRQoL) is common in dialysis patients and associated with increased risks for morbidity and mortality. Patients may present limitations in both physical and mental HRQoL. Poor physical HRQoL may be defined by limited physical function, role limitations due to physical health, dissatisfaction with physical ability, and impaired mobility. Sleep disorders such as obstructive sleep apnea, restless legs, and fatigue are typical manifestations of poor physical HRQoL in dialysis patients. Poor mental HRQoL may be defined by depressive thinking, lack of positive affect, anxiety, and feelings of social isolation. The prevalence of depression is high in dialysis patients. Intensive hemodialysis (HD) can positively address HRQoL. In 3 randomized clinical trials, relative to conventional HD, intensive HD increased physical and mental component summary scores from the 36-Item Short-Form Health Survey (SF-36), although individual treatment effects of daily nocturnal HD were not statistically significant. In another large prospective study, initiation of short daily HD therapy was followed after 12 months by improvements in all SF-36 domains, sleep quality, and restless legs symptoms. In a small study of nocturnal HD, apnea and hypopnea episodes per hour decreased by almost 70% after conversion from conventional HD. Intensive HD is also associated with a large reduction in postdialysis recovery time. In contrast, 2 randomized clinical trials failed to demonstrate statistically significant effects of intensive HD on the Beck Depression Inventory score despite a significant decrease in Beck Depression Inventory score in the prospective study of short daily HD. Furthermore, intensive HD may not improve objective physical performance and can increase burden on caregivers in the home setting. In conclusion, intensive HD potentially can address both physical and mental aspects of poor HRQoL relative to conventional HD. However, more studies are needed to understand the effects of intensive HD, including specific schedules, on HRQoL., (Copyright © 2016 National Kidney Foundation, Inc. Published by Elsevier Inc. All rights reserved.)

Introduction: In an attempt to decrease mortality in patients with end-stage renal disease, an increase in the lifetime of these patients without much focus on health-related quality of life (HRQOL) was pursued for a long period of time. However, lately, an improvement in the quality of this extended lifetime has focused on both the physical as well as the social and emotional aspects, as these parameters may be associated with clinical outcomes in end-stage renal disease patients., Aim: To evaluate the impact of self-determined HRQOL at admission on survival of incident peritoneal dialysis (PD) patients., Patients and Methods: A total of 1,624 incident Brazilian PD patients participating in a multicenter prospective cohort study (BRAZPD) were evaluated. HRQOL was assessed using the SF-36, divided into mental and physical components. Cox proportional regression analysis was used to determine the influence of HRQOL (mental and physical components) on mortality. Multivariate Cox proportional hazards analyses were used to adjust gradually for more potential explanatory variables: first for demographic variables, followed by additional adjustment for socioeconomic, clinical and laboratory variables. The significance level in all analyses was set at p < 0.05. All analyses were carried out with SPSS 17.0., Results: Incident PD patients presented with low HRQOL scores on admission to therapy. Even after correction for sociodemographic variables, comorbidities, PD modality and laboratory parameters, HRQOL (both the mental and the physical components) remained a predictor [HR: 0.97 (CI: 0.95-0.98); HR: 0.97 (CI: 0.96-0.99), respectively] of survival., Conclusion: On admission to therapy, patients presenting with low HRQOL scores for both the mental and the physical components were associated with a higher mortality. These results suggest that early and timely intervention measures to improve the QOL of these patients are important., (© 2015 S. Karger AG, Basel.)

Background and Objectives: A large proportion of the patients on peritoneal dialysis (PD) in Brazil have low levels of education and family income. The present study assessed whether education level and family income are associated with baseline and longitudinal changes in health-related quality of life (HRQOL) scores during the first year of PD therapy., Methods: We evaluated 1624 incident patients from the Brazilian Peritoneal Dialysis Multicenter Study (BRAZPD) at baseline, and 486 of them after 12 months. The SF-36 was used to determine HRQOL and the Karnofsky index (KI), physical performance., Results: At baseline, patients received high KI scores compared with scores on the SF-36. The means of the mental and physical components at baseline and after 12 months were 39.9 ± 10.5 compared with 38.7 ± 11.7 and 41.8 ± 9.6 compared with 40.7 ± 9.8 respectively, which were not statistically different. A multivariate regression analysis showed that age, sex, diabetes, and cardiovascular disease were predictors of the mental component (respectively, β = 0.12, p < 0.001; β = 0.11, p < 0.001; β = -0.08, β = 0.007; and β = -0.07, p = 0.007) and that age, sex, diabetes, cardiovascular disease, hemoglobin, glucose, and creatinine were predictors of the physical component (respectively, β = -0.28, p < 0.001; β = 0.06, p = 0.009; β = -0.09, p = 0.002; β = -0.09, p = 0.001; β = 0.07, p = 0.004; β = -0.05, p = 0.040; and β = 0.05, p = 0.040). Education level and family income were not significantly associated with HRQOL (mental and physical components) in the multivariate regression., Conclusions: The results indicate that, as predictors, family income and education level have no impact on HRQOL, supporting the idea that socio-economic status should not be a barrier to the selection of PD as a treatment modality in Brazil.

Impairment of the health-related quality of life (HRQOL) of patients with end-stage renal disease (ESRD) is now well documented. These impairments involve a wide variety of domains and can be assessed using an array of well-validated instruments. Incorporation of at least some of these instruments into routine patient care is important in order to measure the physical and psychological impact of a disease and its treatment on the HRQOL of patients. How this implementation can be achieved in a practical way is, however, a challenge. As more research focuses on improving the HRQOL of patients with ESRD, the systematic evaluation of HRQOL and incorporation into patient care is becoming increasingly important. Whether strategies to improve the HRQOL of patients will translate into improved patient outcomes--as evidenced by reduced mortality and hospitalizations--and lower costs, remains to be determined.

Patients with chronic kidney disease treated by in-center conventional hemodialysis (3 times per week) have significant impairments in health-related quality of life measures, which have been associated with increased morbidity and mortality. FREEDOM is an ongoing prospective cohort study measuring the potential benefits of at-home short daily (6 times per week) hemodialysis. In this interim report we examine the long-term effect of short daily hemodialysis on health-related quality of life, as measured by the SF-36 health survey. This was administered at baseline, 4 and 12 months after initiation of short daily hemodialysis to 291 participants (total cohort), of which 154 completed the 12-month follow-up (as-treated cohort). At the time of analysis, the mean age was 53 years, 66% were men, 58% had an AV fistula, 90% transitioned from in-center hemodialysis, and 45% had diabetes mellitus. In the total cohort analysis, both the physical- and mental-component summary scores improved over the 12-month period, as did all 8 individual domains of the SF-36. The as-treated cohort analysis showed similar improvements with the exception of the role-emotional domain. Significantly, in the as-treated cohort, the percentage of patients achieving a physical-component summary score at least equivalent to the general population more than doubled. Hence, at-home short daily hemodialysis is associated with long-term improvements in various physical and mental health-related quality of life measures.

Erythropoietic stimulating agents (ESAs) such as erythropoietin have been used for decades to treat the anemia of CKD. Clinical practice guidelines suggest target hemoglobin levels >10 g/dl, and average Hb levels have risen from 9.6 to 12.0 g/dl. Several studies have shown trends for higher mortality and myocardial infarction, higher BP, increased vascular access thrombosis, and strokes in patients treated to target Hb ≥13 g/dl. Patients with profound anemia suffer from symptoms of fatigue, poor energy, weakness, and shortness of breath. Such symptoms reported directly by patients, or patient-reported outcomes (PROs), may be a valuable tool to target ESA treatment in anemic CKD patients. Studies show that improvements in anemia correlate with improvements in these PRO domains in some individuals. We propose that instead of Hb targets for all patients, treatment of anemia should be directed toward improving the areas of patient-perceived quality of life most affected by anemia. PROs can be used by individual patients to prioritize the risks and benefits of ESA treatment. Patients, along with their physicians, can examine Hb level in the context of patients' perception of their quality of life and use ESAs judiciously to improve these perceptions.

Purpose: This study aimed to evaluate the relevance and importance of two SF-36 subscales, Vitality (VT) and Physical Function (PF), to assess concepts of energy and physical function in patients with type 2 diabetes mellitus (DM) and non-dialysis CKD-related anemia., Methods: Patients with clinical history of DM and non-dialysis CKD-related anemia (n = 68) were identified as follows: 40 participated in concept elicitation (CE) interviews; 20 in cognitive interviews (CI), and 8 in pilot interviews. Relevance and importance ratings for SF-36 VT and PF items were obtained. Interviews were recorded, transcribed, and patient expressions of concepts coded. Inter-rater agreement was used to evaluate coding consistency. Concepts elicited were mapped to SF-36 VT and PF items., Results: Patients (n = 64) were 65.6% women, 42.2% Caucasian, with mean age of 66.1 ± 11.6 years. Of 830 coded concepts, 388 (47%) were "Energy" expressions and 287 (35%) were "PF limitations" expressions. Low energy was reported by 85% patients and rated as an important limitation by 88%. Limitations in PF were reported by 56-82% patients and rated important by 44-96%. CE and CI quotes correspond well to SF-36 VT and PF items., Conclusion: SF-36 VT and PF contents were suitable for assessing energy and physical function limitations, respectively, in this patient population.

Objective: To assess the health-related quality of life (HRQL) and economic burden of chronic kidney disease (CKD) related anemia in non-dialysis patients in the United States (US) via literature review., Methods: MEDLINE, EMBASE, PROQOLID, and Cochrane Library/Renal Group Resources were searched. Studies were appraised for patient populations, disease-specific versus generic HRQL assessments, and type and magnitude of health-related costs., Results: The treatment costs for CKD patients with anemia compared to those without anemia were significantly higher and were blunted but persistent after controlling for comorbidities and confounders. Intervention with erythropoiesis stimulating agents (ESA) decreased anemia and avoided hospital admissions. Costs were higher when anemia was poorly controlled or untreated. HRQL burden was mainly due to physical limitations and difficulty in ability to perform activities of daily living. Significant positive correlations between increases in hemoglobin levels and HRQL measures were reported., Conclusions: Although evidence is limited, the economic and HRQL burden of non-dialysis CKD-related anemia is substantial. Under-treatment of anemia may contribute to higher resource consumption and higher costs; however, patient co-morbidities, use of erythropoietin-stimulating agents, and overall management introduce potential confounds. The contribution of anemia to humanistic disease burden is due to a constellation of factors, including physical activity and functional status.

The compromised health-related quality of life (HRQOL) of patients with chronic kidney disease is now well documented. The recent mandate by the Center for Medicare Services in the United States that all dialysis units monitor HRQOL as a condition of coverage has focused attention on the importance of these measures. The challenge for the nephrology care team is understanding how to interpret and utilize the information obtained from these HRQOL measurements. Can HRQOL of these patients be improved? The present review addresses this issue by commenting on strategies that have been used to improve the HRQOL of chronic kidney disease patients. A systematic approach is suggested for nephrology care providers to attempt to evaluate and improve the HRQOL of CKD patients.

Background and Objectives: Very few large-scale studies have investigated the determinants of health-related quality of life (HRQOL) in chronic kidney disease (CKD) patients not on dialysis or the evolution of HRQOL over time., Design and Setting: A prospective evaluation was undertaken of HRQOL in a cohort of 1186 CKD patients cared for in nephrology clinics in North America. Baseline and follow-up HRQOL were evaluated using the validated Kidney Disease Quality Of Life instrument., Results: Baseline measures of HRQOL were reduced in CKD patients in proportion to the severity grade of CKD. Physical functioning score declined progressively with more advanced stages of CKD and so did the score for role-physical. Female gender and the presence of diabetes and a history of cardiovascular co-morbidities were also associated with reduced HRQOL (physical composite score: male: 41.0 +/- 10.2; female: 37.7 +/- 10.8; P < 0.0001; diabetic: 37.3 +/- 10.6; nondiabetic: 41.6 +/- 10.2; P < 0.0001; history of congestive heart failure, yes: 35.4 +/- 9.7; no: 40.3 +/- 10.6; P < 0.0001; history of myocardial infarction, yes: 36.1 +/- 10.0; no: 40.2 +/- 10.6; P < 0.0001). Anemia and beta blocker usage were also associated with lower HRQOL scores. HRQOL measures declined over time in this population. The main correlates of change over time were age, albumin level and co-existent co-morbidities., Conclusions: These observations highlight the profound impact CKD has on HRQOL and suggest potential areas that can be targeted for therapeutic intervention.

Background: Conventional thrice-weekly hemodialysis (HD) has limited the ability to generate further improvements in patient quality of life, morbidity, and mortality. Daily HD (DHD) offers the promise of providing clinical and economic benefits. The objectives of the Following Rehabilitation, Economics and Everyday-Dialysis Outcome Measurements Study are to evaluate outcomes of DHD (6 times/wk) with the NxStage System One (NxStage Medical Inc, Lawrence, MA) device., Design: Cohort study with matched control group., Setting & Participants: The DHD group will include up to 500 participants at 70 clinical sites, enrolling for 3 years with a minimum of 1-year follow-up. Study candidates include adult patients (age >or= 18 years) with end-stage renal disease who are considered suitable candidates for DHD with the NxStage System One device by the treating physician and who have Medicare as their primary insurance payer. The control group will consist of a matched thrice-weekly in-center HD cohort derived from the US Renal Data System database using a 10:1 ratio, totaling 5,000 patients., Predictor: Treatment with DHD and "standard of care" thrice-weekly HD., Outcomes & Measurements: The primary intent-to-treat analysis compares hospitalization days/patient-year between the DHD and thrice-weekly HD groups. Other outcomes recorded in both groups include non-treatment-related medical expenditures. In addition, in the DHD cohort, changes in quality-of-life measures (baseline, 4 and 12 months, and every 6 months thereafter); urea kinetics; parameters related to anemia, bone and mineral metabolism, and nutrition; vascular access interventions; and use of medications will be examined., Conclusions: This study has the potential to elucidate the health and economic benefits of DHD and complement results of current clinical trials.

Background: The relationship between quality of life (QofL) and anemia has been the subject of recent debates; it has been suggested that the QofL changes associated with the treatment of anemia of chronic kidney disease (CKD) or ESRD patients should not be used in making decisions to treat anemia in CKD patients., Design, Setting, Participants, & Measurements: This study examines the relationship between Kidney Disease Quality of Life (KDQofL) questionnaire domains and hemoglobin (Hgb) levels in 1200 patients with stage 3, 4, and 5 CKD followed in seven centers. QofL measures were compared in a stepwise fashion for hemoglobin levels of <11, 11 to <12, 12 to <13, and > or =13. ANOVA was used to examine the relationship between QofL scores and Hgb level, age, CKD stage, and albumin level; a history of diabetes, congestive heart failure, or myocardial infarction; use of erythropoetic-stimulating agents (ESA); and the interaction of hemoglobin level and ESA., Results: The results demonstrate that with increasing Hgb levels there is a statistically significant increase in all four physical domains, the energy/vitality domain, and the physical composite score of the SF-36, and the general health score on the kidney disease component of the questionnaire. The most dramatic improvements in these various domains occurred between the <11 and the 11 to 12 group., Conclusions: Higher Hgb levels are associated with improved QofL domains of the KDQofL questionnaire. These findings have implications for the care of CKD patients in terms of the initiation of and the Hgb target of ESA therapy.

The psychosocial assessment of the patient with end-stage renal disease is critically important because (1) there is growing evidence that the psychosocial status of the patient impacts medical outcomes and (2) the objective of therapy is to maximize a patient's sense of well-being and quality of life. This is particularly true for patients receiving a home-based therapy such as chronic peritoneal dialysis. The present review outlines a possible structure and format for performing psychosocial evaluations for patients maintained on chronic peritoneal dialysis. But, each facility must design its own format, making sure that the critical domains discussed in this review are addressed.

In recent years, there has been an increased interest in performing hemodialysis (HD) more frequently than thrice weekly, particularly in the home setting. This interest has been stimulated by some studies that have indicated significant benefits to performing more frequent HD on various medical and quality of life outcome measures. However, only a few studies using varying quality of life instruments have critically examined the impact of frequent HD on the quality of life of patients. Although not consistent across studies, results suggest a positive impact of more frequent HD on patients' quality of life. It is hoped that the results of two landmark studies, now in progress (the Frequent Hemodialysis Network trial and the FREEDOM study), will provide more insight into the impact of more frequent HD on quality of life.

This study was undertaken to examine patient satisfaction with peritoneal dialysis (PD) and hemodialysis (HD) therapies, focusing attention on the positive and negative impact of the therapies on patients' lives. Patients were recruited from a free-standing PD unit and two free-standing HD units. A total of 94% (n = 62) of eligible PD and 84% (n = 84) of eligible HD patients participated. HD patients were significantly older and had higher Charlson Comorbidity Index scores than the PD patients, but there were no differences in duration of dialysis treatment, prevalence of diabetes, educational backgrounds, or home situations. Patients were asked to rate their overall satisfaction with and the overall impact of their dialysis therapy on their lives, using a 1 to 10 Likert scale. In addition, patients were asked to rate the impact of their therapy on 15 domains that had been cited previously as being important for patients' quality of life. The mean satisfaction score for PD patients (8.02 +/- 1.41) was higher than for HD patients (7.4 +/- 1.4; P = 0.15). PD patients indicated that there was less impact of the dialysis treatment on their lives globally (7.25 +/- 2.12 versus 6.19 +/- 2.83; P = 0.019). In addition, PD patients noted less impact of the therapy in 14 of the 15 domains examined. With the use of a proportional odds model analysis, the only significant predictor of overall satisfaction and impact of therapy was dialysis modality (P = 0.037 and P = 0.021, respectively). Patients also were asked to comment freely on the positive and negative effects of the dialysis treatments on their lives, and a taxonomy of patient perceptions and concerns was developed. This study suggests that PD patients in general are more satisfied with their overall care and believe that their treatment has less impact on their lives than HD patients.

Background: Health-related quality of life (QOL) is an important measure of how disease affects patients' lives. Dialysis patients have decreased QOL relative to healthy controls. Little is known about QOL in patients with chronic kidney disease (CKD) before renal replacement therapy., Methods: The Medical Outcomes Study Short Form-36 (SF-36), a standard QOL instrument, was used to evaluate 634 patients (mean glomerular filtration rate [GFR], 23.6 +/- 9.6 mL/min/1.73 m2 [0.39 +/- 0.16 mL/s/1.73 m2]) enrolled in a 4-center, prospective, observational study of CKD. SF-36 scores in these patients were compared with those in a prevalent cohort of hemodialysis (HD) patients and healthy controls (both from historical data). QOL data also were analyzed for correlations with GFR and albumin and hemoglobin levels in multivariable analyses., Results: Patients with CKD had higher SF-36 scores than a large cohort of HD patients (P < 0.0001 for 8 scales and 2 summary scales), but lower scores than those reported for the US adult population (P < 0.0001 for 7 of 8 scales and 1 of 2 summary scales). Patients with CKD stage 4 had lower QOL scores than patients with CKD stage 5, although differences were not significant. Hemoglobin level was associated positively with higher mental and physical QOL scores (P < 0.05) in all individual and component scales except Pain., Conclusion: SF-36 scores were higher in this CKD cohort compared with HD patients, but lower than in healthy controls. GFR was not significantly associated with QOL. Hemoglobin level predicted both physical and mental domains of the SF-36. Longitudinal studies are needed to define at-risk periods for decreases in QOL during progression of CKD.

Despite more than 20 yr of use, relative differences in health-related quality of life (HRQOL) between hemodialysis (HD) and peritoneal dialysis (PD) are not clearly known. The objective of this study was to compare self-reported HRQOL and overall health status for HD and PD patients at the initiation of dialysis therapy and 1 yr later. A prospective cohort of incident ESRD patients was enrolled between October 1995 and June 1998 at 81 outpatient dialysis units in 19 states and included 698 HD and 230 PD patients who completed a baseline CHOICE Health Experience Questionnaire. The main outcome measured was change in qualify-of-life scores from start of dialysis to 1 yr on dialysis and overall health status. Of 928 patients who completed the baseline questionnaire, 585 also completed the 12-mo questionnaire; 101 had died, 55 had received a kidney transplant, and 88 had moved to a new dialysis clinic. PD patients were slightly younger, were more likely to be white, were well-educated, were employed, were married, had less comorbidity, and had higher hematocrit. Unadjusted baseline scores showed better HRQOL for PD patients in both generic and ESRD domains (bodily pain, travel, diet restrictions, and dialysis access [P < 0.05]). At 1 yr, SF-36 scores improved, whereas some ESRD domains improved and others deteriorated. HD patients had greater improvements in two SF-36 domains (physical functioning and general health perception) than PD patients, but results were mixed for ESRD domains (PD is better for finances, HD is better for sleep and overall quality of life). HD and PD patients did not differ in change in overall health status. HD and PD are associated with similar HRQOL outcomes at 1 yr. Generic HRQOL in two domains improved more for HD patients. However, for ESRD-specific HRQOL, results were not consistent; some domains were better for PD patients whereas others were better for HD patients. In advising patients about modality choices, trade-offs should be discussed and individual preferences for specific aspects of HRQOL should be elicited.

Background/aims: Hemodialysis is associated with acute changes in several physiologic factors. Previous studies have suggested significant clinical and quality of life (QOL) benefits of daily hemodialysis (DHD) compared with 3 times weekly hemodialysis (CHD). We conducted a prospective trial to evaluate the effects of switching chronic hemodialysis patients to in-center DHD for a 12-month period., Methods: There were no exclusion criteria. Patients received hemodialysis 6 times per week. The study set a standardized weekly Kt/V (stdKt/V) goal of 3.0. A broad array of clinical parameters was determined. QOL was assessed with multiple instruments., Results: Eleven subjects completed 12 months and 12 completed 6 months on DHD. Significant changes relative to baseline at 12 months of DHD included decreased BP and improvements in QOL parameters by multiple techniques. 100% of patients at 12 months wished to continue DHD., Conclusions: DHD offers advantages over CHD with respect to improved QOL and BP control.

Numerous reports of quality-of-life data in chronic peritoneal dialysis (CPD) patients in the United States and Western Europe use the short form questionnaire (SF-36). Few centers in Europe have reported data examining the incidence of depression in CPD patients. Depression has been shown to correlate with morbidity and mortality in dialysis patients. A high incidence of clinical depression is seen in end-stage renal disease patients in the United States. We thought it could be important to compare depression measurements between the United States and European countries. Quality-of-life data of the peritoneal dialysis patients from the New Haven continuous ambulatory peritoneal dialysis (CAPD) unit and from the New Technology Center at Hospital #31 in St. Petersburg were compared. The Beck Depression Inventory (BDI) and the SF-36, which includes the mental component score (MCS) and the physical component score (PCS), were administered to the patients. The study participants included 147 Russian and 96 U.S. patients. The BDI, PCS, and MCS scores were similar in both groups. The BDI scores in the Russian patients indicated that a high incidence of clinical depression likely exists in that patient population. The utility of the BDI in assessing quality-of-life issues in Europe and Russia requires further evaluation.

Previous studies by our group have attempted to examine quality of life (QoL) issues in a cohort of end-stage renal disease (ESRD) patients maintained on chronic peritoneal dialysis (CPD) by assessing a variety of psychological tests and by asking patients to rate their own QoL. The present study was undertaken to extend previous observations by asking patients to spontaneously select those domains of life experience that they think are most important in determining their quality of life. Sixty-eight medically stable CPD patients were asked to spontaneously select those three to five domains felt to be most important to them in defining their QoL. The 307 responses were then grouped into 22 broad categories by three investigators. The most frequently selected domains focused on interpersonal relationships. Domains that enhance the quality of one's day and add meaning to one's life were selected with a midrange frequency. Some domains that might intuitively seem to be important for a patient's QoL were selected with a surprisingly low frequency. These findings suggest that to understand what CPD patients value in assessing their QoL can best be determined by asking them directly and not by using predetermined variables.

Patient dropout from chronic peritoneal dialysis (CPD) and transfer to hemodialysis remains a major problem with patients on CPD. Peritonitis, exit-site infections, and medical complications requiring hospitalization often adversely affect the outcome of CPD. The role of psychosocial factors in determining patient outcome and influencing the rates of these complications is not clear. Our group has employed a variety of instruments, including the Patient Related Anxiety Scale (PRAS), Beck's Depression Inventory (BDI), Kupfer-Detre System II somatic symptom scale (KDS-II), and a patient self-assessed quality of life (PAQOL) questionnaire to assess quality of life and to objectively evaluate the psychosocial status of the patient treated with CPD. The present study extends previous observations by relating the results of these psychosocial instruments to the incidence of various complications in 103 patients maintained on CPD. Patients were divided into low-scoring (lowest symptoms of depression, anxiety, somatic symptoms, and best quality of life evaluation), intermediate, and high-scoring (highest symptoms of depression, anxiety, somatic symptoms, and worst quality of life) categories. The peritonitis rates, exit-site infection rates, and days of hospitalization of the three categories were then compared. The results demonstrate significantly higher complication rates in the high-scoring when compared to the low-scoring patients. Thus screening patients maintained on CPD with objective measures of psychosocial functioning may enable caregivers to more accurately predict which patients are at greater risk for developing medical complications.

In 49 patients receiving continuous ambulatory peritoneal dialysis, we assessed the relative influences of adequacy of dialysis (assessed by kinetic transfer/volume urea) and psychological symptoms (depression and anxiety) upon the patients' evaluation of their overall quality of life (QoL). Subjects completed self-rating forms for anxiety, depressive, and somatic symptoms, for discrete areas relevant to QoL, and for overall QoL; clinicians also rated QoL. Depressive symptoms proved a much stronger correlate of overall QoL than did the biochemical measure of dialysis adequacy, and they remained influential even after adjustment for anxiety, kinetic transfer/volume, and somatic symptoms. In contrast, the effects of kinetic transfer/volume, anxiety symptoms, and somatic symptoms dropped sharply when adjusted for the other variables. Because psychological (especially depressive) symptoms may be stronger determinants of patients' overall QoL than is adequacy of dialysis, assessing QoL and psychological status should be part of the care of end-stage renal disease patients.