An update on the global disparities in kidney disease burden and care across world countries and regions.

BACKGROUND: Since 2015, the International Society of Nephrology (ISN) Global Kidney Health Atlas (ISN-GKHA) has spearheaded multinational efforts to understand the status and capacity of countries to provide optimal kidney care, particularly in low-resource settings. In this iteration of the ISN-GKHA, we sought to extend previous findings by assessing availability, accessibility, quality, and affordability of medicines, kidney replacement therapy (KRT), and conservative kidney management (CKM). METHODS: A consistent approach was used to obtain country-level data on kidney care capacity during three phases of data collection in 2016, 2018, and 2022. The current report includes a detailed literature review of published reports, databases, and registries to obtain information on the burden of chronic kidney disease and estimate the incidence and prevalence of treated kidney failure. Findings were triangulated with data from a multinational survey of opinion leaders based on the WHO's building blocks for health systems (ie, health financing, service delivery, access to essential medicines and health technology, health information systems, workforce, and governance). Country-level data were stratified by the ISN geographical regions and World Bank income groups and reported as counts and percentages, with global, regional, and income level estimates presented as medians with interquartile ranges. FINDINGS: The literature review used information on prevalence of chronic kidney disease from 161 countries. The global median prevalence of chronic kidney disease was 9·5% (IQR 5·9-11·7) with the highest prevalence in Eastern and Central Europe (12·8%, 11·9-14·1). For the survey analysis, responses received covered 167 (87%) of 191 countries, representing 97·4% (7·700 billion of 7·903 billion) of the world population. Chronic haemodialysis was available in 162 (98%) of 165 countries, chronic peritoneal dialysis in 130 (79%), and kidney transplantation in 116 (70%). However, 121 (74%) of 164 countries were able to provide KRT to more than 50% of people with kidney failure. Children did not have access to haemodialysis in 12 (19%) of 62 countries, peritoneal dialysis in three (6%) countries, or kidney transplantation in three (6%) countries. CKM (non-dialysis management of people with kidney failure chosen through shared decision making) was available in 87 (53%) of 165 countries. The annual median costs of KRT were: US$19 380 per person for haemodialysis, $18 959 for peritoneal dialysis, and $26 903 for the first year of kidney transplantation. Overall, 74 (45%) of 166 countries allocated public funding to provide free haemodialysis at the point of delivery; use of this funding scheme increased with country income level. The median global prevalence of nephrologists was 11·8 per million population (IQR 1·8-24·8) with an 80-fold difference between low-income and high-income countries. Differing degrees of health workforce shortages were reported across regions and country income levels. A quarter of countries had a national chronic kidney disease-specific strategy (41 [25%] of 162) and chronic kidney disease was recognised as a health priority in 78 (48%) of 162 countries. INTERPRETATION: This study provides new information about the global burden of kidney disease and its treatment. Countries in low-resource settings have substantially diminished capacity for kidney care delivery. These findings have major policy implications for achieving equitable access to kidney care. FUNDING: International Society of Nephrology.

Mapping the Edmonton Symptom Assessment System-Revised: Renal to the EQ-5D-5L in patients with chronic kidney disease.

PURPOSE: The Edmonton Symptom Assessment System-Revised: Renal (ESAS-r: Renal) is a disease-specific patient-reported outcome measure (PROM) that assesses symptoms common in chronic kidney disease (CKD). There is no preference-based scoring system for the ESAS-r: Renal or a mapping algorithm to predict health utility values. We aimed to develop a mapping algorithm from the ESAS-r: Renal to the Canadian EQ-5D-5L index scores. METHODS: We used data from a multi-centre cluster randomized-controlled trial of the routine measurement and reporting of PROMs in hemodialysis units in Northern Alberta, Canada. In two arms of the trial, both the ESAS-r: Renal and the EQ-5D-5L were administered to CKD patients undergoing hemodialysis. We used data from one arm for model estimation, and data from the other for validation. We explored direct and indirect mapping models; model selection was based on statistical fit and predictive power. RESULTS: Complete data were available for 506 patient records in the estimation sample and 242 in the validation sample. All models tended to perform better in patients with good health, and worse in those with poor health. Generalized estimating equations (GEE) and generalized linear model (GLM) on selected ESAS-r: Renal items were selected as final models as they fitted the best in estimation and validation sample. CONCLUSION: When only ESAS-r: Renal data are available, one could use GEE and GLM to predict EQ-5D-5L index scores for use in economic evaluation. External validation on populations with different characteristics is warranted, especially where renal-specific symptoms are more prevalent.

Development of a patient-reported outcome measure for the assessment of symptom burden in pediatric chronic kidney disease (PRO-Kid).

BACKGROUND: Chronic kidney disease (CKD) and kidney failure in childhood are associated with significant and life-altering morbidities and lower quality of life. Emerging evidence suggests that management should be guided in part by symptom burden; however, there is currently no standardized assessment tool for quantifying symptom burden in this pediatric population. This study aimed to develop and refine a patient-reported symptom assessment tool for children with CKD/kidney failure (PRO-Kid), to evaluate the frequency and impact of symptoms. METHODS: This was a prospective observational study of children and caregivers of children with CKD/kidney failure at two Canadian pediatric care centers. Building on previously published patient-reported outcome measures (PROs) for the assessment of symptom burden in other populations, we drafted a 13-item questionnaire. Cognitive interviews were performed with children and caregivers of children with CKD/kidney failure to iteratively refine the questionnaire. RESULTS: Twenty-four participants completed cognitive interviewing (11 children, 13 caregivers). The most common symptoms endorsed were feeling left out, feeling sad/depressed, inability to focus, tiredness, nausea, vomiting, not wanting to eat, and changes in the taste of food. Feeling left out was added to the questionnaire as almost all participants voiced this as a frequent and impactful symptom, resulting in a 14-item questionnaire. CONCLUSIONS: PRO-Kid is the first pediatric CKD/kidney failure-specific PRO tool to assess symptom burden. Future work should validate this tool in a larger cohort so that it may be used to improve the care of children living with CKD/kidney failure. A higher resolution version of the Graphical abstract is available as Supplementary information.

Hemodialysis Use and Practice Patterns: An International Survey Study.

RATIONALE & OBJECTIVE: Hemodialysis (HD) is the most common form of kidney replacement therapy. This study aimed to examine the use, availability, accessibility, affordability, and quality of HD care worldwide. STUDY DESIGN: A cross-sectional survey. SETTING & PARTICIPANTS: Stakeholders (clinicians, policy makers, and consumer representatives) in 182 countries were convened by the International Society of Nephrology from July to September 2018. OUTCOMES: Use, availability, accessibility, affordability, and quality of HD care. ANALYTICAL APPROACH: Descriptive statistics. RESULTS: Overall, representatives from 160 (88%) countries participated. Median country-specific use of maintenance HD was 298.4 (IQR, 80.5-599.4) per million population (pmp). Global median HD use among incident patients with kidney failure was 98.0 (IQR, 81.5-140.8) pmp and median number of HD centers was 4.5 (IQR, 1.2-9.9) pmp. Adequate HD services (3-4 hours 3 times weekly) were generally available in 27% of low-income countries. Home HD was generally available in 36% of high-income countries. 32% of countries performed monitoring of patient-reported outcomes; 61%, monitoring of small-solute clearance; 60%, monitoring of bone mineral markers; 51%, monitoring of technique survival; and 60%, monitoring of patient survival. At initiation of maintenance dialysis, only 5% of countries used an arteriovenous access in almost all patients. Vascular access education was suboptimal, funding for vascular access procedures was not uniform, and copayments were greater in countries with lower levels of income. Patients in 23% of the low-income countries had to pay >75% of HD costs compared with patients in only 4% of high-income countries. LIMITATIONS: A cross-sectional survey with possibility of response bias, social desirability bias, and limited data collection preventing in-depth analysis. CONCLUSIONS: In summary, findings reveal substantial variations in global HD use, availability, accessibility, quality, and affordability worldwide, with the lowest use evident in low- and lower-middle-income countries.

Peritoneal Dialysis Use and Practice Patterns: An International Survey Study.

RATIONALE & OBJECTIVE: Approximately 11% of people with kidney failure worldwide are treated with peritoneal dialysis (PD). This study examined PD use and practice patterns across the globe. STUDY DESIGN: A cross-sectional survey. SETTING & PARTICIPANTS: Stakeholders including clinicians, policy makers, and patient representatives in 182 countries convened by the International Society of Nephrology between July and September 2018. OUTCOMES: PD use, availability, accessibility, affordability, delivery, and reporting of quality outcome measures. ANALYTICAL APPROACH: Descriptive statistics. RESULTS: Responses were received from 88% (n=160) of countries and there were 313 participants (257 nephrologists [82%], 22 non-nephrologist physicians [7%], 6 other health professionals [2%], 17 administrators/policy makers/civil servants [5%], and 11 others [4%]). 85% (n=156) of countries responded to questions about PD. Median PD use was 38.1 per million population. PD was not available in 30 of the 156 (19%) countries responding to PD-related questions, particularly in countries in Africa (20/41) and low-income countries (15/22). In 69% of countries, PD was the initial dialysis modality for≤10% of patients with newly diagnosed kidney failure. Patients receiving PD were expected to pay 1% to 25% of treatment costs, and higher (>75%) copayments (out-of-pocket expenses incurred by patients) were more common in South Asia and low-income countries. Average exchange volumes were adequate (defined as 3-4 exchanges per day or the equivalent for automated PD) in 72% of countries. PD quality outcome monitoring and reporting were variable. Most countries did not measure patient-reported PD outcomes. LIMITATIONS: Low responses from policy makers; limited ability to provide more in-depth explanations underpinning outcomes from each country due to lack of granular data; lack of objective data. CONCLUSIONS: Large inter- and intraregional disparities exist in PD availability, accessibility, affordability, delivery, and reporting of quality outcome measures around the world, with the greatest gaps observed in Africa and South Asia.

Availability, Accessibility, and Quality of Conservative Kidney Management Worldwide.

BACKGROUND AND OBJECTIVES: People with kidney failure typically receive KRT in the form of dialysis or transplantation. However, studies have suggested that not all patients with kidney failure are best suited for KRT. Additionally, KRT is costly and not always accessible in resource-restricted settings. Conservative kidney management is an alternate kidney failure therapy that focuses on symptom management, psychologic health, spiritual care, and family and social support. Despite the importance of conservative kidney management in kidney failure care, several barriers exist that affect its uptake and quality. DESIGN, SETTING, PARTICIPANTS, & MEASUREMENTS: The Global Kidney Health Atlas is an ongoing initiative of the International Society of Nephrology that aims to monitor and evaluate the status of global kidney care worldwide. This study reports on findings from the 2018 Global Kidney Health Atlas survey, specifically addressing the availability, accessibility, and quality of conservative kidney management. RESULTS: Respondents from 160 countries completed the survey, and 154 answered questions pertaining to conservative kidney management. Of these, 124 (81%) stated that conservative kidney management was available. Accessibility was low worldwide, particularly in low-income countries. Less than half of countries utilized multidisciplinary teams (46%); utilized shared decision making (32%); or provided psychologic, cultural, or spiritual support (36%). One-quarter provided relevant health care providers with training on conservative kidney management delivery. CONCLUSIONS: Overall, conservative kidney management is available in most countries; however, it is not optimally accessible or of the highest quality.

A cluster randomized controlled trial for the Evaluation of routinely Measured PATient reported outcomes in HemodialYsis care (EMPATHY): a study protocol.

BACKGROUND: Kidney failure requiring dialysis is associated with poor health outcomes and health-related quality of life (HRQL). Patient-reported outcome measures (PROMs) capture symptom burden, level of functioning and other outcomes from a patient perspective, and can support clinicians to monitor disease progression, address symptoms, and facilitate patient-centered care. While evidence suggests the use of PROMs in clinical practice can lead to improved patient experience in some settings, the impact on patients' health outcomes and experiences is not fully understood, and their cost-effectiveness in clinical settings is unknown. This study aims to fill these gaps by evaluating the effectiveness and cost-effectiveness of routinely measuring PROMs on patient-reported experience, clinical outcomes, HRQL, and healthcare utilization. METHODS: The EMPATHY trial is a pragmatic multi-centre cluster randomized controlled trial that will implement and evaluate the use of disease-specific and generic PROMs in three kidney care programs in Canada. In-centre hemodialysis units will be randomized into four groups, whereby patients: 1) complete a disease-specific PROM; 2) complete a generic PROM; 3) complete both types of PROMs; 4) receive usual care and do not complete any PROMs. While clinical care pathways are available to all hemodialysis units in the study, for the three active intervention groups, the results of the PROMs will be linked to treatment aids for clinicians and patients. The primary outcome of this study is patient-provider communication, assessed by the Communication Assessment Tool (CAT). Secondary outcomes include patient management and symptoms, use of healthcare services, and the costs of implementing this intervention will also be estimated. The present protocol fulfilled the Standard Protocol Items: Recommendations for Intervention Trials (SPIRIT) checklist. DISCUSSION: While using PROMs in clinical practice is supported by theory and rationale, and may engage patients and enhance their role in decisions regarding their care and outcomes, the best approach of their use is still uncertain. It is important to rigorously evaluate such interventions and investments to ensure they provide value for patients and health systems. TRIAL REGISTRATION: Protocol version (1.0) and trial registration data are available on www.clinicaltrials.gov , identifier: NCT03535922 , registered May 24, 2018.

Time to Improve Informed Consent for Dialysis: An International Perspective.

The literature reveals that current nephrology practice in obtaining informed consent for dialysis falls short of ethical and legal requirements. Meeting these requirements represents a significant challenge, especially because the benefits and risks of dialysis have shifted significantly with the growing number of older, comorbid patients. The importance of informed consent for dialysis is heightened by several concerns, including: (1) the proportion of predialysis patients and patients on dialysis who lack capacity in decision making and (2) whether older, comorbid, and frail patients understand their poor prognosis and the full implications to their independence and functional status of being on dialysis. This article outlines the ethical and legal requirements for a valid informed consent to dialysis: (1) the patient was competent, (2) the consent was made voluntarily, and (3) the patient was given sufficient information in an understandable manner to make the decision. It then considers the application of these requirements to practice across different countries. In the process of informed consent, the law requires a discussion by the physician of the material risks associated with dialysis and alternative options. We argue that, legally and ethically, this discussion should include both the anticipated trajectory of the illness and the effect on the life of the patient with particular regard to the outcomes most important to the individual. In addition, a discussion should occur about the option of a conservative, nondialysis pathway. These requirements ensure that the ethical principle of respect for patient autonomy is honored in the context of dialysis. Nephrologists need to be open to, comfortable with, and skillful in communicating this information. From these clear, open, ethically, and legally valid consent discussions, a significant dividend will hopefully flow for patients, families, and nephrologists alike.

Prevalence of Barriers and Facilitators to Enhancing Conservative Kidney Management for Older Adults in the Primary Care Setting.

BACKGROUND AND OBJECTIVES: Conservative management of adults with stage 5 CKD (eGFR<15 ml/min per 1.73 m2) is increasingly being provided in the primary care setting. We aimed to examine perceived barriers and facilitators for conservative management of older adults by primary care physicians. DESIGN, SETTING, PARTICIPANTS, & MEASUREMENTS: In 2015, we conducted a cross-sectional, population-based survey of all primary care physicians in Alberta, Canada. Eligible participants had experience caring for adults ages ≥75 years old with stage 5 CKD not planning on initiating dialysis. Questionnaire items were on the basis of a qualitative descriptive study informed by the Behavior Change Wheel and tested for face and content validity. Physicians were contacted via postal mail and/or fax on the basis of a modified Dillman method. RESULTS: Four hundred nine eligible primary care physicians completed the questionnaire (9.6% response rate). The majority of respondents were men (61.6%), were ages 40-60 years old (62.6%), and practiced in a large/medium population center (68.0%). The most common barrier to providing conservative care in the primary care setting was the inability to access support to maintain patients in the home setting (39.1% of respondents; 95% confidence interval, 34.6% to 43.6%). The second most common barrier was working with nonphysician providers with limited kidney-specific clinical expertise (32.3%; 95% confidence interval, 28.0% to 36.7%). Primary care physicians indicated that the two most common strategies that would enhance their ability to provide conservative management would be the ability to use the telephone to contact a nephrologist or clinical staff from the conservative care clinic (86.9%; 95% confidence interval, 83.7% to 90.0% and 85.6%; 95% confidence interval, 82.4% to 88.9%, respectively). CONCLUSIONS: We identified important areas to inform clinical programs to reduce barriers and enhance facilitators to improve primary care physicians' provision of conservative kidney care. In particular, primary care physicians require additional resources for maintaining patients in their home and telephone access to nephrologists and conservative care specialists.

Supportive Care: Economic Considerations in Advanced Kidney Disease.

Kidney supportive care describes multiple interventions for patients with advanced CKD that focus on improving the quality of life and addressing what matters most to patients. This includes shared decision making and aligning treatment plans with patient goals through advance care planning and providing relief from pain and other distressing symptoms. Kidney supportive care is an essential component of quality care throughout the illness trajectory. However, in the context of limited health care resources, evidence of its cost-effectiveness is required to support decisions regarding appropriate resource allocation. We review the literature and outline the evidence gaps and particular issues associated with measuring the costs, benefits, and cost-effectiveness of kidney supportive care. We find evidence that the dominant evaluative framework of a cost per quality-adjusted life year may not be suitable for evaluations in this context and that relevant outcomes may include broader measures of patient wellbeing, having care aligned with treatment preferences, and family satisfaction with the end of life care experience. To improve the evidence base for the cost-effectiveness of kidney supportive care, large prospective cohort studies are recommended to collect data on both resource use and health outcomes and should include patients who receive conservative kidney management without dialysis. Linkage to administrative datasets, such as Medicare, Hospital Episode Statistics, and the Pharmaceutical Benefits Scheme for prescribed medicines, can provide a detailed estimate of publicly funded resource use and reduce the burden of data collection for patients and families. Longitudinal collection of quality of life and functional status should be added to existing cohort or kidney registry studies. Interventions that improve health outcomes for people with advanced CKD, such as kidney supportive care, not only have the potential to improve quality of life, but also may reduce the high costs associated with unwanted hospitalization and intensive medical treatments.

Executive summary of the KDIGO Controversies Conference on Supportive Care in Chronic Kidney Disease: developing a roadmap to improving quality care.

Patients with advanced chronic kidney disease (CKD) have a high burden of physical and psychosocial symptoms, poor outcomes, and high costs of care. Current paradigms of care for this highly vulnerable population are variable, prognostic and assessment tools are limited, and quality of care, particularly regarding conservative and palliative care, is suboptimal. The KDIGO Controversies Conference on Supportive Care in CKD reviewed the current state of knowledge in order to define a roadmap to guide clinical and research activities focused on improving the outcomes of people living with advanced CKD, including those on dialysis. An international group of multidisciplinary experts in CKD, palliative care, methodology, economics, and education identified the key issues related to palliative care in this population. The conference led to a working plan to address outstanding issues in this arena, and this executive summary serves as an output to guide future work, including the development of globally applicable guidelines.

How the ESRD quality incentive program could potentially improve quality of life for patients on dialysis.

For over 20 years, the quality of medical care of the Medicare ESRD Program has been a concern. The Centers for Medicare and Medicaid Services have implemented the ESRD Quality Incentive Program, which uses the principles of value-based purchasing; dialysis providers are paid for performance on predefined quality measures, with a goal of improving patient outcomes and the quality of patient care. The ESRD Quality Incentive Program measures have been criticized, because they are largely disease oriented and use easy-to-obtain laboratory-based indicators, such as Kt/V and hemoglobin, that do not reflect outcomes that are most important to patients and have had a minimal effect on survival or quality of life. A key goal of improving quality of care is to enhance quality of life, a patient-important quality measure that matters more to many patients than even survival. None of the ESRD Quality Incentive Program measures assess patient-reported quality of life. As outlined in the National Quality Strategy, the Centers for Medicare and Medicaid Services are holding providers accountable in six priority domains, in which quality measures have been and are being developed for value-based purchasing. Three measures-patient experience and engagement, clinical care, and care coordination-are particularly relevant to quality care in the ESRD Program; the 2014 ESRD Quality Incentive Program includes six measures, none of which provide data from a patient-centered perspective. Value-based purchasing is a well intentioned step to improve care of patients on dialysis. However, the Centers for Medicare and Medicaid Services need to implement significant change in what is measured for the ESRD Quality Incentive Program to be patient centered and aligned with patients' values, preferences, and needs. This paper provides examples of potential quality measures for patient experience and engagement, clinical care, and care coordination, which if implemented, would be much more likely to enhance quality of life for patients with ESRD than present ESRD Quality Incentive Program measures.

Knowledge and attitudes of Canadian First Nations people toward organ donation and transplantation: a quantitative and qualitative analysis.

BACKGROUND: Organ donation and transplantation rates are low for aboriginal people in Canada, despite a high demand. STUDY DESIGN: An explanatory mixed-methods design was used to describe knowledge of and preferences for organ donation and transplantation among First Nations people and identify factors that may influence these preferences. SETTING & PARTICIPANTS: We recruited on- and off-reservation First Nations adults. METHODOLOGY: A 45-item survey was administered to 198 participants, of whom 21 were assessed further with a qualitative interview using a multiple case study approach. ANALYTICAL APPROACH: In an iterative process, themes were identified from qualitative data using critical realism as the theoretical framework. Critical realism is an approach that describes the interface between natural and social worlds to explain human behavior. RESULTS: Although 83% of participants were in favor of transplantation, only 38% were willing to donate their organs after death, 44% had not thought about organ donation, and 14% did not believe it was important. Only 18.7% of participants reported that their cultural beliefs influenced their views on organ donation and transplantation. In the multivariable analysis, the only factors associated with willingness to donate organs were higher education and considering organ donation important. Four themes emerged from qualitative data: importance of traditional beliefs, recognition of need due to the epidemic of diabetes among Canadian aboriginal people, reconciliation between traditional beliefs and need, and general apathy in the community. LIMITATIONS: Cultural, socioeconomic, and political diversity exist between and within aboriginal groups. Findings may not be generalizable to other aboriginal communities. CONCLUSIONS: Willingness to donate organs was lower in these First Nations participants compared to the general population. Education to address knowledge deficits, emphasize the negative impact of organ failure on the community, and contextualize organ donation within the older traditional native beliefs to help First Nations people understand how organ donation may be integrated into native spirituality likely is required to increase donation rates.

Existential and supportive care needs among patients with chronic kidney disease.

CONTEXT: Living with chronic kidney disease (CKD) is associated with spiritual distress and frequently precipitates a search for meaning and hope; yet, very little is known about these patients' spiritual needs. OBJECTIVES: To describe the nature, prevalence, and predictors of spiritual and supportive care needs in CKD. METHODS: Prospective cohort study of 253 CKD patients who completed a seven-item spiritual and seven-item supportive care needs assessment. RESULTS: Patients reported a mean (standard deviation [SD]) number of 2.9 (2.6) spiritual needs, with 69.1% of patients reporting at least one spiritual need. The mean (SD) number of supportive care needs was 3.5 (2.1), with 91.4% of patients reporting at least one of these needs. Thirty-two percent of the patients had high spiritual needs (defined as reporting ≥5 of the seven needs). Similarly, 37% of the patients reported high supportive care needs. Neither spiritual nor supportive care needs were associated with age, gender, race, marital status, dialysis modality, time on dialysis, or comorbidity. CONCLUSION: These patients had substantial spiritual and supportive care needs. There were no clear predictors of high spiritual or supportive care needs, highlighting the importance of evaluating all CKD patients for unmet needs. Health professionals will need to better understand and attend to CKD patients' spiritual needs to optimize quality care.

Impact of pain and symptom burden on the health-related quality of life of hemodialysis patients.

CONTEXT: Dialysis patients experience tremendous symptom burden and substantial impaired health-related quality of life (HRQL). OBJECTIVES: We determined the association between symptom burden and HRQL in 591 hemodialysis patients. METHODS: Patients completed the modified Edmonton Symptom Assessment System and the Kidney Dialysis Quality of Life Short Form at baseline and after six months. RESULTS: There were no demographic, serological, or dialysis-related predictors for either HRQL or symptom burden. Pain, tiredness, lack of well-being, and depression were the only independent predictors of mental HRQL, accounting for 42.5% of the variation in the baseline mental health composite (MHC). Pain, fatigue, lack of well-being, and shortness of breath were the only independent predictors of physical HRQL, accounting for 38.5% of the variation in the baseline physical health composite (PHC). After follow-up, only changes in depression, anxiety, tiredness, and lack of appetite were independently associated with a change in MHC score, accounting for 48.7% of the variability. Only changes in pain, tiredness, and lack of appetite were independently associated with a change in PHC, accounting for 44.6% of the variability in the final multivariate regression model. No change in biochemical parameters predicted a change in either the MHC or the PHC. CONCLUSION: Symptom burden in end-stage renal disease was substantial and had a tremendous negative impact on all aspects of hemodialysis patients' HRQL. These patients, therefore, would likely benefit from the institution of programs to reduce symptom burden.

Comparing the Health Utilities Index Mark 3 (HUI3) with the Short Form-36 preference-based SF-6D in chronic kidney disease.

OBJECTIVE: Assess within-subject agreement and compare discriminative abilities between the SF-6D and the Health Utilities Index Mark 3 (HUI3) in patients with chronic kidney disease (CKD). METHODS: The HUI3 and Short Form-36 were self-completed by 185 CKD patients enrolled in a prospective study of incident patients with stage 4 and 5 CKD. RESULTS: The mean preference-based score for the SF-6D was 0.67 +/- 0.13 compared to 0.58 +/- 0.26 for the HUI3 (P < 0.01). There was a strong association between SF-6D and HUI3 scores (Pearson correlation coefficient 0.55, 95% CI 0.43-0.65) and moderate agreement with an intraclass correlation coefficient of 0.44. The HUI3 was better able to capture more severe burden of illness with fewer floor effects. The SF-6D was better at capturing differences among patients at the top range of the scale with fewer ceiling effects. Both the HUI3 and SF-6D were able to discriminate between patient groups differing in disease severity defined as predialysis versus dialysis dependent and depressive symptoms using a Beck Depression Inventory II score of >or=14 as the cutoff. The HUI3 was better able to discriminate greater depressive symptoms. CONCLUSION: The SF-6D and the HUI3 generate different preference-based scores for patients with CKD and any comparison between their scores should be made with caution. The HUI3 appears more suitable for measuring the health of populations with greater disability such as patients with CKD. It remains to be determined whether these differences will remain when one compares within-instrument differences in preference scores over time.

Evidence on the construct validity of the Health Utilities Index Mark 2 and Mark 3 in patients with chronic kidney disease.

OBJECTIVE: This study assessed the construct validity of the Health Utilities Index Mark 2 (HUI2) and Mark 3 (HUI3) in the context of chronic kidney disease (CKD) and compared their ability to discriminate between groups of patients with varying disease severity. STUDY DESIGN AND SETTING: The HUI2 and HUI3 were correlated with the Medical Outcomes 36-Item Short-Form, Kidney Disease Quality of Life Questionnaire, and the Beck Depression Inventory II in 185 patients with stage 4 and 5 CKD. RESULTS: About 86% of a priori hypotheses were confirmed for HUI2 and 95% for HUI3, providing support for the construct validity of both measures. Mean (SD) overall utility score for the HUI2 was 0.74 (0.20), significantly higher than that for the HUI3, 0.58 (0.26) (P<0.001). The cognitive, emotion, and pain attributes of the HUI3 were able to identify a significantly greater proportion of patients with impairment compared to the HUI2. CONCLUSION: The results are consistent with construct validity for the HUI2 and HUI3 in patients with stage 4 and 5 CKD. However, the HUI3 appears to have superior psychometric properties compared with the HUI2 in this patient population.

Ethical considerations regarding pregnancy in chronic kidney disease.

Pregnancy in the context of chronic kidney disease (CKD) is a daunting clinical scenario for both health-care providers and patients and raises ethical and social questions that have important implications for health policy and funding. Despite potential problems, women with CKD will continue to conceive and deliver babies, and nephrologists will be faced with the challenge of caring for them. This paper discusses ethical issues regarding pregnancy in CKD and highlights the controversies surrounding parental, fetal, and societal rights.

Longitudinal validation of a modified Edmonton symptom assessment system (ESAS) in haemodialysis patients.

BACKGROUND: Health-related quality of life (HRQL) is an important outcome in the treatment of end-stage renal disease (ESRD) and appears to be highly associated with patient self-report of symptom burden. This study examines the longitudinal validity of the modified Edmonton symptom assessment system (ESAS) to determine the impact of change in symptom burden on the change in HRQL of haemodialysis (HD) patients. METHODS: 261 haemodialysis patients completed the Kidney Disease Quality of Life-Short Form (KDQOL-SF) and the ESAS at baseline and at 6 months. RESULTS: The change in overall symptom distress score was strongly correlated with the change in KDQOL-SF subscales symptom/problem list (R=-0.73, P<0.01), effects of kidney disease (R=-0.53, P<0.01), and burden of kidney disease (R=-0.46, P<0.01) as well as overall physical health composite (R=-0.58, P<0.01) and overall mental health composite (R=-0.68, P<0.01). The change in symptom burden, as described by the ESAS, accounted for 46% of the change in the mental HRQL and 34% of the change in the physical HRQL. There was no correlation between baseline demographics, comorbidity or changes in biochemical markers with changes in either the ESAS or HRQL scores. CONCLUSION: The modified ESAS is a simple, valid tool for the longitudinal assessment of physical and psychological symptom burden in ESRD and is responsive to change in HD patients. The use of this symptom assessment scale and improved management of patient symptoms would be expected to positively impact HD patients' HRQL.

Pain in hemodialysis patients: prevalence, cause, severity, and management.

BACKGROUND: There is growing evidence that dialysis patients have a high burden of symptoms, including pain. However, the prevalence, cause, severity, and management of pain in dialysis patients have not been described. METHODS: This prospective cohort study of 205 Canadian hemodialysis (HD) patients describes the prevalence, cause, severity, and management of pain in this population. A chart review for demographic and clinical data was conducted, and patients completed a questionnaire that incorporated the Brief Pain Inventory, followed by the McGill Pain Questionnaire. RESULTS: One hundred three patients (50%) reported a problem with pain. Patients with pain had been on HD therapy longer (52.2 months) than those without pain (37.7 months). Causes of pain were diverse, and 18.4% of patients had more than a single cause of their pain. Musculoskeletal pain was most common (50.5%) and equal in severity to pain associated with peripheral neuropathy and peripheral vascular disease. Fifty-five percent of patients with pain rated their worst episode in the previous 24 hours as severe. Thirty-two percent of patients with pain were administered no analgesics, 29.1% were administered nonopioid analgesics, 26.2% were administered weak opioids, and 9.7% were administered strong opioids. The Pain Management Index describes the effectiveness of pain management and was negative in 74.8% of patients, indicating ineffective management. CONCLUSION: Pain is a significant problem in more than 50% of HD patients and is not being effectively managed. The development of effective pain management strategies, underpinned by appropriate training and education, is necessary to improve the quality of life for dialysis patients.