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Patients reaching end-stage kidney disease face difficult decisions, including choosing among renal replacement therapies (RRTs). With an increasingly elderly and frail population, there is growing interest in conservative kidney management (CKM) as a viable alternative to dialysis. Shared decision-making (SDM) is a patient-centered approach to these decisions, in which choices are viewed within the explicitly discussed values and preferences of the patient. Patient decision aids (PDAs) are tools designed to facilitate these discussions. The choice between dialysis and CKM is particularly complex, given the poor prognostication data for CKM. This is an emerging area for PDAs in nephrology. This review highlights care gaps around SDM for dialysis versus CKM, presents current PDAs for making choices about RRTs and CKM and discusses exciting new work around the development of novel PDAs.Many PDAs have been created recently, primarily to help with decisions about RRTs. Three new PDAs are in testing phases to aid with the more complex decision of choosing between dialysis and CKM.International nephrology communities are moving toward improved SDM with their patients and PDAs are being developed to facilitate this process.

RATIONALE & OBJECTIVE: It is relatively unusual for US patients with advanced chronic kidney disease (CKD) to forgo initiation of maintenance dialysis. Our objective was to describe practice approaches of US nephrologists who have provided conservative care for members of this population. STUDY DESIGN: Qualitative study using semi-structured interviews. SETTING & PARTICIPANTS: A national sample of 21 nephrologists experienced in caring for patients with advanced CKD who decided not to start dialysis. ANALYTICAL APPROACH: Grounded theory methods to identify dominant themes reflecting nephrologists’ experiences with and approaches to conservative care for patients with advanced CKD. RESULTS: Nephrologists who participated in this study were primarily from academic practices (n=14) and urban areas (n=15). Two prominent themes emerged from qualitative analysis reflecting nephrologists’ experiences with and approaches to conservative care: 1) Person-centered practices, which described a holistic approach to care that included basing treatment decisions on what mattered most to individual patients, framing dialysis as an explicit choice, being mindful of sources of bias in medical decision-making and being flexible to the changing needs, values and preferences of patients; and, 2) Improvising a care infrastructure, which described the challenges of managing patients conservatively within health systems that are not optimally configured to support their needs. Participating nephrologists described cobbling together resources, assuming a range of different healthcare roles, preparing patients to navigate health systems in which initiation of dialysis served as a powerful default and championing the principles of conservative care among their colleagues. LIMITATIONS: The themes identified here likely are not generalizable to most US nephrologists. CONCLUSION: Insights from a select group of US nephrologists who are early adopters of conservative care signal the need for a stronger cultural and health system commitment to building care models capable of supporting patients who choose to forgo dialysis.

Background The ACCEPT survey (Audit of Communication, CarE Planning, and DocumenTation) evaluates the quality of Advance Care Planning (ACP) practice through patient-reported experience measures and ACP documentation audit. We evaluated practice three years post system-wide policy for ACP implementation and patient awareness of their “Goals of Care Designation” (GCD) medical order. Method Consecutive, consenting patients over 55 years with serious, chronic illness or age >80 years with any acute admission were prospectively enrolled from acute medical units in seven hospitals across Alberta, Canada. Research assistants administered the ACCEPT survey within 5 days of admission and reviewed participant charts for ACP and GCD documentation. Results Of 502 patients (mean age 81 years, 53% female) 93% had a GCD order in their chart but only 30% were aware of this. 33% reported having discussed none of the five key elements of goals of care conversations (patients’ values and beliefs, prognosis, patients’ fears and concerns, treatment preferences and prior ACP documentation or conversations) with a hospital clinician. Raw agreement between patients’ expressed preferences for EOL care and documentation in patient charts was 56% (concordance kappa=0.273). Multivariate regression analysis found that awareness of GCD order was associated with health region, patient frailty, quality of goals of care conversations in hospital and whether ACP conversations were considered important to the patient. Conclusions Despite a system-wide policy, we found evidence of serious concerns about the quality of ACP and GCD practice. Intentional quality improvement interventions are likely needed to enhance practice and achieve patient-centred care.

Background Patient-reported outcome measures of fatigue used in research in haemodialysis vary widely in the dimensions assessed; and the importance of these dimensions to patients and health professionals is unknown. This study aimed to identify the most important dimensions of fatigue to assess in patients on haemodialysis participating in trials. Methods In an international survey, patients/caregivers and health professionals rated the absolute and relative importance of content and measurement dimensions to include in a core outcome measure of fatigue. A 9-point Likert scale (7-9 indicating critical importance) was used to assess absolute importance and best-worst scale was used to assess importance of each dimension compared to others. Results In total, 169 patients/caregivers and 336 health professionals from 60 countries completed the survey. Both groups (patients/caregivers and health professionals) rated life participation (7.55), tiredness (7.40), level of energy (7.37), ability to think clearly (7.15), post-dialysis fatigue (7.13), motivation (7.03) and ability to concentrate (7.03) as critically important (mean Likert score greater than 7) content dimensions to include in a core outcome measure. Compared to patients and caregivers, health professionals rated post-dialysis fatigue, memory and verbal abilities more highly. Based on the relative importance scores, life participation was ranked most highly above all content dimensions. Severity was rated and ranked the most important measurement dimension by all stakeholders. Conclusion A core outcome measure of fatigue should assess impact of fatigue on life participation, tiredness and level of energy, using a severity scale. A consistent and valid measurement of fatigue will improve the value of trials in supporting decision-making based on this important outcome.

Background Few studies have explored dialysis patients' perspectives on dialysis decision-making and end-of-life-care (EoLC) preferences. We surveyed a racially diverse cohort of maintenance dialysis patients in the Cleveland, OH, USA, metropolitan area. Materials and methods In this cross-sectional study, we administered a 41-item questionnaire to 450 adult chronic dialysis patients. Items assessed patients' knowledge of their kidney disease as well as their attitudes toward chronic kidney disease (CKD) treatment issues and EoLC issues. Results The cohort included 67% Blacks, 27% Caucasians, 2.8% Hispanics, and 2.4% others. The response rate was 94% (423/450). Most patients considered it essential to obtain detailed information about their medical condition (80.6%) and prognosis (78.3%). Nearly 19% of respondents regretted their decision to start dialysis. 41% of patients would prefer treatment(s) aimed at relieving pain rather than prolonging life (30.5%), but a majority would want to be resuscitated (55.3%). Only 8.4% reported having a designated healthcare proxy, and 35.7% reported completing a living will. A significant percentage of patients wished to discuss their quality of life (71%), psychosocial and spiritual concerns (50.4%), and end-of-life issues (38%) with their nephrologist. Conclusion Most dialysis patients wish to have more frequent discussions about their disease, prognosis, and EoLC planning. Findings from this study can inform the design of future interventions. .

Objective To determine the global capacity (availability, accessibility, quality, and affordability) to deliver kidney replacement therapy (dialysis and transplantation) and conservative kidney management. Design International cross sectional survey. Setting International Society of Nephrology (ISN) survey of 182 countries from July to September 2018. Participants Key stakeholders identified by ISN’s national and regional leaders. Main outcome measures Markers of national capacity to deliver core components of kidney replacement therapy and conservative kidney management. Results Responses were received from 160 (87.9%) of 182 countries, comprising 97.8% (7338.5 million of 7501.3 million) of the world’s population. A wide variation was found in capacity and structures for kidney replacement therapy and conservative kidney management—namely, funding mechanisms, health workforce, service delivery, and available technologies. Information on the prevalence of treated end stage kidney disease was available in 91 (42%) of 218 countries worldwide. Estimates varied more than 800-fold from 4 to 3392 per million population. Rwanda was the only low income country to report data on the prevalence of treated disease; 5 ( Conclusions These comprehensive data show the capacity of countries (including low income countries) to provide optimal care for patients with end stage kidney disease. They demonstrate substantial variability in the burden of such disease and capacity for kidney replacement therapy and conservative kidney management, which have implications for policy.

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.

Context The efficacy and safety of cannabinoids to treat symptoms in individuals with kidney disease is uncertain. Objectives We sought to elicit Canadian nephrologists' views regarding the use and study of cannabinoids in patients with kidney disease in an Internet-based survey of Canadian of Society of Nephrology members treating adult patients with kidney disease including dialysis. Methods The degree to which respondents supported the use or study of cannabinoids for symptoms common in kidney disease was assessed using a modified Likert scale ranging from 1 to 7 (anchored at 1—definitely would not and 7—being definitely would). Participants were asked their degree of support for cannabinoid use in clinical practice and for randomized controlled trials examining cannabinoids for anxiety, depression, restless legs syndrome, itchiness, fatigue, chronic pain, decreased appetite, nausea/vomiting, sleep disorder, and others. Multilevel multivariable linear regression was used to identify independent predictors of the degree of support. Results There were 151 (43.4%) responses from 348 eligible participants. One hundred twenty-four (82%) previously cared for patients using prescribed cannabinoids by other providers, and 29 (19%) had previously prescribed cannabinoids themselves. One hundred thirty-seven (91%) had previously cared for patients using nonprescription cannabinoids, which were used most commonly recreationally (88.3%), for chronic pain (73.7%) or for anxiety (52.6%). Respondents supported the use of cannabinoids (mean score >5) for each symptom in the setting of refractory symptoms. Similarly, respondents supported enrolling patients for trials for all symptoms (mean scores >5). Conclusion Nephrologists broadly support the use and study of cannabinoids for symptoms in patients with kidney disease.

Background and objectives Conservative management of adults with stage 5 CKD (eGFR 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.

Dialysis care is often associated with poor outcomes including low quality of life (QOL). To improve patient-reported outcomes, incorporation of the patient’s needs and perspective into the medical care they receive is essential. This article provides a framework to help clinicians integrate symptom assessment and other measures such as QOL and frailty scores into a clinical approach to the contemporary supportive care of patients with advanced CKD. This approach involves (1) defining our understanding of kidney supportive care, patient-centered dialysis, and palliative dialysis; (2) understanding and recognizing common symptoms associated with advanced CKD; (3) discussing the concepts of physical function, frailty, and QOL and their role in CKD; and (4) identifying the structural and process barriers that may arise when patient-centered dialysis is being introduced into clinical practice.

Historic migration and the ever–increasing current migration into Western countries have greatly changed the ethnic and cultural patterns of patient populations. Because health care beliefs of minority groups may follow their religion and country of origin, inevitable conflict can arise with decision making at the end of life. The principles of truth telling and patient autonomy are embedded in the framework of Anglo–American medical ethics. In contrast, in many parts of the world, the cultural norm is protection of the patient from the truth, decision making by the family, and a tradition of familial piety, where it is dishonorable not to do as much as possible for parents. The challenge for health care professionals is to understand how culture has enormous potential to influence patients’ responses to medical issues, such as healing and suffering, as well as the physician-patient relationship. Our paper provides a framework of communication strategies that enhance crosscultural competency within nephrology teams. Shared decision making also enables clinicians to be culturally competent communicators by providing a model where clinicians and patients jointly consider best clinical evidence in light of a patient’s specific health characteristics and values when choosing health care. The development of decision aids to include cultural awareness could avoid conflict proactively, more productively address it when it occurs, and enable decision making within the framework of the patient and family cultural beliefs.

Background: Advance care planning initiatives are being implemented across healthcare systems around the world, but how best to evaluate their implementation is unknown. Aim: To identify gaps and/or redundancies in current evaluative strategies to help healthcare systems develop future evaluative frameworks for ACP. Design: Systematic review. Methods: Peer-reviewed and gray literature searches were conducted till February 2015 to answer: “What methods have healthcare systems used to evaluate implementation of advance care planning initiatives?” A PICOS framework was developed to identify articles describing the implementation and evaluation of a health system–level advance care planning initiative. Outcome measures were mapped onto a conceptual quality indicator framework based on the Institute of Medicine and Donabedian models of healthcare quality. Results: A total of 46 studies met inclusion criteria for analysis. Most articles reported on single parts of a healthcare system (e.g. continuing care). The most common outcome measures pertained to document completion, followed by healthcare resource use. Patient-, family-, or healthcare provider-reported outcomes were less commonly measured. Concordance measures (e.g. dying in place of choice) were reported by only 26% of studies. The conceptual quality indicator framework identified gaps and redundancies in measurement and is presented as a potential foundation from which to develop a comprehensive advance care planning evaluation framework. Conclusion: Document completion is frequently used to evaluate advance care planning program implementation; capturing the quality of care appears to be more difficult. This systematic review provides health system administrators with a comprehensive summary of measures used to evaluate advance care planning and may identify gaps in evaluation within their local context.

BackgroundAdvance care planning (ACP) encompasses both verbal and written communications expressing preferences for future health and personal care and helps prepare people for healthcare decision-making in times of medical crisis. Healthcare systems are increasingly promoting ACP as a way to inform medical decision-making, but it is not clear how public engagement in ACP activities is changing over time.MethodsRaw data from 3 independently conducted public polls on ACP engagement, in the same Canadian province, were analysed to assess whether participation in ACP activities changed over 6 years.ResultsStatistically significant increases were observed between 2007 and 2013 in: recognising the definition of ACP (54.8% to 80.3%, OR 3.37 (95% CI 2.68 to 4.24)), discussions about healthcare preferences with family (48.4% to 59.8%, OR 1.41 (95% CI 1.17 to 1.69)) and with healthcare providers (9.1% to 17.4%, OR 1.98 (95% CI 1.51 to 2.59)), written ACP plans (21% to 34.6%, OR 1.77 (95% CI 1.45 to 2.17)) and legal documentation (23.4% to 42.7%, OR 2.13 (95% CI 1.75 to 2.59)). These remained significant after adjusting for age, education and self-rated health status.ConclusionsACP engagement increased over time, although the overall frequency remains low in certain elements such as discussing ACP with healthcare providers. We discuss factors that may be responsible for the increase and provide suggestions for healthcare systems or other public bodies seeking to stimulate engagement in ACP.

This cohort study compares in-hospital days and intensity of care among older adults with kidney failure who were treated vs not treated with maintenance dialysis., Key Points Question Is maintenance dialysis associated with increased time in the hospital and more intensive care in older adults with kidney failure? Findings In this cohort study of 968 older adults with kidney failure, those who received dialysis spent a mean of 22 more in-hospital days each year and were almost 2 times more likely to receive intensive care than those who did not receive dialysis. Meaning These findings suggest that maintenance dialysis is associated with increased length of hospital stay and intensive care and less use of palliative care., Importance Comparative outcome data examining the association of dialysis initiation with hospital length of stay and intensity of care in older adults with kidney failure are scarce, and prior studies are limited to patients treated by nephrology teams. Objective To compare in-hospital days and intensity of care among older adults with kidney failure who were treated vs not treated with maintenance dialysis. Design, Setting, and Participants This population-based, retrospective cohort study included adults in Alberta, Canada, 65 years or older with kidney failure, defined by at least 2 consecutive outpatient estimated glomerular filtration rate values of less than 10 mL/min/1.73 m2 spanning a period of at least 90 days from May 15, 2002, to March 31, 2014. Data were analyzed from August 1, 2017, to August 29, 2019. Exposures Time-varying exposure to maintenance dialysis for treatment of kidney failure. Main Outcomes and Measures The primary outcome was rate of in-hospital days. Secondary outcomes included rates of hospital admissions, intensive care unit admissions, cardiopulmonary resuscitations, inpatient palliative care, and emergency department visits; risk of in-hospital death; and time to admission to long-term care. Results A total of 968 patients (median age, 78.5 [interquartile range, 72.4-84.7] years; 489 men [50.5%]; median follow-up, 2.0 [interquartile range, 0.8-3.9] years) were included in the analysis. Patients who underwent dialysis spent more adjusted in-hospital days per person-year (36.25 [95% CI, 30.72-41.77] vs 14.65 [95% CI, 12.28-17.02]; incidence rate ratio [IRR], 2.47 [95% CI, 1.99-3.08]). However, the dialysis group did not have a higher rate of hospital admissions (1.18 [95% CI 1.07-1.29] vs 1.32 [95% CI 1.17-1.48] per year; IRR, 0.89 [95% CI, 0.77-1.03]). Patients in the dialysis group had a higher rate of intensive care unit admissions per 1000 hospitalizations (98.37 [95% CI, 81.09-115.65] vs 54.51 [95% CI, 37.76-71.26]; IRR, 1.80 [95% CI, 1.28-2.54]) and lower rates of inpatient palliative care per 1000 in-hospital days (3.92 [95% CI, 3.13-4.72] vs 8.60 [95% CI, 6.3-11.0]; IRR, 0.45 [95% CI, 0.32-0.64]). Conclusions and Relevance In this cohort study, compared with nondialysis care, patients who received maintenance dialysis spent more time in the hospital and were more likely to be admitted to intensive care units. This finding suggests trade-offs between longer survival and higher intensity of use of health care services as a function of dialysis initiation. Maintenance dialysis may be a proxy for the type of philosophy of care driving increased in-hospital time and intensive care and less use of palliative care.

Context It has become commonplace to use family caregivers as proxy responders where patients are unable to provide information about their symptoms and concerns to health care providers. Objectives The objective of this study was to determine the degree of concordance between patients' and family members' reports of patient symptoms and concerns at end of life. Methods Sample dyads included a mix of patients residing at home, in a nursing home, in a long-term care facility, or in hospice. Diagnoses included patients with amyotrophic lateral sclerosis (n = 75), chronic obstructive pulmonary disease (n = 52), end-stage renal disease (n = 42), and institutionalized, cognitively intact frail elderly (n = 49). Dyads completed the Patient Dignity Inventory (PDI), the modified Structured Interview Assessment of Symptoms and Concerns in Palliative Care, and Graham and Longman's two-item Quality of Life Scale. Results Concordance was less than 70% for seven of the 25 PDI items, with the lowest concordance (65.1%) for the item “not being able to continue with my usual routines.” For all but one PDI item, discordance was in the direction of family members reporting that the patient was worse off than the patient had indicated. Where discordance was observed on the Structured Interview Assessment of Symptoms and Concerns in Palliative Care and Quality of Life Scales, the trend toward family members overreporting patient distress and poor quality of life continued. Conclusion Understanding discordance between patients and family member reports of symptoms and concerns is a valuable step toward minimizing patient and family burden at end of life.

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.

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.

Patients with progressive chronic kidney disease (CKD) have high morbidity, mortality, and symptom burden. Cardiovascular disease (CVD) and congestive heart failure (CHF) often contribute to these burdens and should be considered when providing recommendations for care. This review aims to summarize recent literature relevant to the provision of palliative and end-of-life care for patients with progressive CKD and specifically highlights issues relevant to those with CVD and CHF.Dialysis may not benefit older, frail patients with progressive CKD, especially those with other comorbidities. Patients managed conservatively (i.e., without dialysis) may live as long as patients who elect to start dialysis, with better preservation of function and quality of life and with fewer acute care admissions. Decisions regarding dialysis initiation should be made on an individual basis, keeping in mind each patient's goals, comorbidities, and underlying functional status. Conservative management of progressive kidney disease is frequently not offered but is likely to benefit many older, frail patients with comorbidities such as CHF and CVD.A palliative approach to the care of many patients with progressive CKD is essential to ensuring they receive appropriate quality care.

Background Although advance care planning (ACP) is fairly well understood, significant barriers to patient participation remain. As a result, tools to assess patient behaviour are required. The objective of this study was to improve the measurement of patient engagement in ACP by detecting existing survey design issues and establishing content and response process validity for a new survey entitled Behaviours in Advance Care Planning and ACtions Survey (BACPACS). Methods We based our new tool on that of an existing ACP engagement survey. Initial item reduction was carried out using behavior change theories by content and design experts to help reduce response burden and clarify questions. Thirty-two patients with chronic diseases (cancer, heart failure or renal failure) were recruited for the think aloud cognitive interviewing with the new, shortened survey evaluating patient engagement with ACP. Of these, n = 27 had data eligible for analysis (n = 8 in round 1 and n = 19 in rounds 2 and 3). Interviews were audio-recorded and analyzed using the constant comparison method. Three reviewers independently listened to the interviews, summarized findings and discussed discrepancies until consensus was achieved. Results Item reduction from key content expert review and conversation analysis helped decrease number of items from 116 in the original ACP Engagement Survey to 24–38 in the new BACPACS depending on branching of responses. For the think aloud study, three rounds of interviews were needed until saturation for patient clarity was achieved. The understanding of ACP as a construct, survey response options, instructions and terminology pertaining to patient engagement in ACP warranted further clarification. Conclusions Conversation analysis, content expert review and think aloud cognitive interviewing were useful in refining the new survey instrument entitled BACPACS. We found evidence for both content and response process validity for this new tool. Electronic supplementary material The online version of this article (10.1186/s12904-017-0236-6) contains supplementary material, which is available to authorized users.

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.

For well over a decade, we have known that dialysis patients and their families and friends desire opportunities to engage in advance care planning with their nephrologist and dialysis teams ([1][1]–[3][2]). Clinical practice guidelines have recommended advance care planning as central tenets of

International audience; In using a patient-centered approach, neither a clinician nor a prognostic score can predict with absolute certainty how well a patient will do or how long he will live; however, validated prognostic scores may improve accuracy of prognostic estimates, thereby enhancing the ability of the clinicians to appreciate the individual burden of disease and the prognosis of their patients and inform them accordingly. They may also facilitate nephrologist's recommendation of dialysis services to those who may benefit and proposal of alternative care pathways that might better respect patients' values and goals to those who are unlikely to benefit. The purpose of this article is to discuss the use as well as the limits and deficiencies of currently available prognostic tools. It will describe new predictors that could be integrated in future scores and the role of patients' priorities in development of new scores. Delivering patient-centered care requires an understanding of patients' priorities that are important and relevant to them. Because of limits of available scores, the contribution of new prognostic tools with specific markers of the trajectories for patients with CKD and patients' health reports should be evaluated in relation to their transportability to different clinical and cultural contexts and their potential for integration into the decision-making processes. The benefit of their use then needs to be quantified in clinical practice by outcome studies including health-related quality of life, patient and caregiver satisfaction, or utility for improving clinical management pathways and tailoring individualized patient-centered strategies of care. Future research also needs to incorporate qualitative methods involving patients and their caregivers to better understand the barriers and facilitators to use of these tools in the clinical setting. Information given to patients should be supported by a more realistic approach to what dialysis is likely to entail for the individual patient in terms of likely quality and quantity of life according to the patient's values and goals and not just the possibility of life prolongation.

The past five decades have shown a tremendous growth, world wide, in the number of patients with advanced chronic kidney disease (CKD). Patients with advanced CKD today are notably older, have significant comorbidity, substantial symptom burden and, ultimately, have high mortality. Subsequently, there is an increased global awareness of the need to integrate palliative care into routine kidney care to enhance the quality of life and death for patients with advanced CKD. This article outlines a conceptual framework for kidney palliative care for patients with advanced CKD and discusses issues such as symptom burden, illness trajectories, advance care planning, and complex decision-making, including decisions around the appropriate initiation, withholding and withdrawal of dialysis, and the potential palliative care roles and responsibilities for nursing staff within kidney care programs.

Poor communication and failure to establish goals of care result in unnecessary admissions to hospital, invasive procedures, suffering, and prolongation of the dying process for many CKD patients. Comprehensive CKD care requires systematic integration of advance care planning (ACP). This report describes an approach to ACP for patients with CKD, discusses essential aspects of how to facilitate these conversations, and briefly reviews the empirical evidence supporting the value of ACP.

For more than 20 years, nephrologists have been reporting that they are increasingly being expected to dialyze patients whom they believe may receive little benefit from dialysis therapy. During this time, there has been substantial research about the outcomes of patients of differing ages and comorbid conditions requiring dialysis and the development of clinical practice guidelines for dialysis decision making based on research evidence, ethics, and the law. The importance of palliative medicine to the care of the patient throughout the continuum of kidney disease also has been recognized, and its application has been described. This article summarizes these advances and provides an approach for decision making and treatment for patients who are not likely to benefit from dialysis therapy.

Chronic pain is a common and debilitating symptom experienced in the context of numerous other physical and emotional symptoms by many patients with chronic kidney disease (CKD). Management of pain with opioids in CKD can be problematic given the prominence of adverse effects of opioids in CKD, which may exacerbate symptoms, such as nausea, anorexia, pruritus, and insomnia, all of which impact negatively on patients' health-related quality of life. Novel therapeutic approaches for pain and symptom management in CKD are required. Recent research in the area of cannabinoids (CBs) is legitimizing the use of cannabis-based medicine. In this review, we describe the symptom burden borne by patients with CKD and review some of the key basic science and clinical literature to evaluate the potential use of CBs for the management of overall symptom burden in CKD.

Patients with ESRD have extensive and unique end-of-life care considerations and needs. Despite substantial advancements in renal palliative care over the past decade, much research is still required. Identifying CKD patients whose illness trajectory has shifted and would likely benefit from a palliative approach to care should be a priority of all nephrology programs. Further research on symptom management, the effectiveness of ACP, the life expectancy of conservatively managed and incident dialysis patients, anticipated changes in functional status and HRQL with the initiation of dialysis (especially among the frail elderly), and the best way to deliver renal palliative care is required to maximize the integration and effectiveness of renal palliative care services.

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.

This review explores advance care planning within the context of end-stage renal disease and discusses new research that helps define how to initiate and facilitate effective advance care planning for patients with end-stage renal disease.

Pain is a significant problem for a substantial number of chronic kidney disease (CKD) patients which often goes unrecognized. The World Health Organization analgesic ladder and basic pharmacological principles can be used as a template for the assessment and treatment of pain in CKD patients. This review examines pain management principles for patients with CKD.

Background and objectives: Cycler-assisted peritoneal dialysis (CCPD) has been associated with decreased sodium removal compared with continuous ambulatory peritoneal dialysis (CAPD) as a result of peritoneal sodium sieving during the short dwells that are associated with CCPD. This may have adverse consequences for management of extracellular fluid volume (ECFV). This study compared ECFV in patients who received CAPD or CCPD; CCPD dwell times were maximized by limiting the number of exchanges, and the use of icodextrin for the long daytime dwells was widespread. Design, setting, participants, & measurements: This was an observational, cross-sectional study of 158 prevalent patients (90 CAPD, 68 CCPD). Demographic data, blood work, and 24-h dialysate and urine samples were collected from all participants between January 2004 and July 2006. They subsequently underwent assessment of ECFV by multifrequency bioimpedance spectroscopy analysis. Multivariate analysis was used to determine the relationship between peritoneal dialysis modality and ECFV. Potential cofounders including age, comorbidity, time on dialysis, residual renal function, and icodextrin use were identified a priori. Results: There were no differences in BP, use of antihypertensive medications, or the presence of peripheral edema between CAPD and CCPD patients. Similarly, there was no difference in the ratio of ECFV to total body water between CAPD (51.8%) and CCPD (51.9%) patients (P = 0.929). Conclusions: There is no difference in BP, sodium removal, or volume control in patients who use a contemporary approach to CCPD that uses fewer night cycles and liberalizes the use of icodextrin when compared with CAPD.

ObjectiveAssess 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).MethodsThe 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.ResultsThe 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 ≥14 as the cutoff. The HUI3 was better able to discriminate greater depressive symptoms.ConclusionThe 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.

A growing body of literature has demonstrated that chronic pain is common for patients with end- stage renal disease (ESRD), is typically moderate or severe, and impacts virtually every aspect of health-related quality of life. Unfortunately, there is a lack of clinical and research focus in this area in nephrology and pain in ESRD is undertreated. This paper reviews the epidemiology of chronic pain in ESRD, discusses basic principles of pain assessment and management, and highlights some of the challenges in pain management in ESRD with the hope of guiding health professionals in the effective management of pain in patients with ESRD.

Withholding and withdrawal of dialysis has been a reality since dialysis was invented. Only in the past 20 years has it been formally studied, and we still have a great deal to learn. The nephrology community has slowly come to accept that, for some of our patients, not having dialysis is a better option than continuing or initiating therapy. The principles of palliative care throughout the disease trajectory and hospice care at end of life are germane to this population due to its high symptom burden and mortality rate. We review what is currently known concerning patients who choose to withhold or withdraw from dialysis, and the current barriers (and solutions) to providing them with optimal palliative care.

Comprehensive care of patients with end-stage renal disease (ESRD) requires expertise in advance care planning (ACP), including attention to ethical, psychosocial, and spiritual issues related to starting, continuing, withholding, and stopping dialysis therapy. ACP currently is under evolution from a document-driven decision-focused event. This article describes a new approach to ACP that emphasizes a relational patient-centered process that focuses on broader goals of care for a particular dialysis patient with known medical problems and is designed to serve as a guide to help nephrologists, social workers, and other health care professionals explore ACP discussions with their patients with ESRD. Specifically, we define ACP, highlight goals and key features of this facilitated ACP process, and provide an interview guide with examples of questions that can be used to explore the various aspects of ACP with patients and their families. Outcomes of such an ACP process will not be measured by increasing the number of completed advance directives, but by improving satisfaction with the entire end-of-life experience and having outcomes match patient preferences. It is expected that such a process will enhance shared decision making among patient, surrogate, and health care provider and help build strong and intimate relationships that can only serve to enhance end-of-life care. Throughout this process, patients are not abandoned as they confront the realities of declining health and functional status, but rather are supported through their illness and life on dialysis treatment.

Objective The purpose of this study was to identify four non-cancer populations that might benefit from a palliative approach; and describe and compare the prevalence and patterns of dignity related distress across these diverse clinical populations. Design A prospective, multi-site approach was used. Setting Outpatient clinics, inpatient facilities or personal care homes, located in Winnipeg, Manitoba and Edmonton, Alberta, Canada. Participants Patients with advanced Amyotrophic Lateral Sclerosis (ALS), Chronic Obstructive Pulmonary Disease (COPD), End Stage Renal Disease (ESRD); and the institutionalized alert frail elderly. Main Outcome Measure In addition to standardized measures of physical, psychological and spiritual aspects of patient experience, the Patient Dignity Inventory (PDI). Results Between February 2009 and December 2012, 404 participants were recruited (ALS, 101; COPD, 100; ESRD, 101; and frail elderly, 102). Depending on group designation, 35% to 58% died within one year of taking part in the study. While moderate to severe loss of sense of dignity did not differ significantly across the four study populations (4–11%), the number of PDI items reported as problematic was significantly different i.e. ALS 6.2 (5.2), COPD 5.6 (5.9), frail elderly 3.0 (4.4) and ESRD 2.3 (3.9) [p < .0001]. Each of the study populations also revealed unique and distinct patterns of physical, psychological and existential distress. Conclusion People with ALS, COPD, ESRD and the frail elderly face unique challenges as they move towards the end of life. Knowing the intricacies of distress and how they differ across these groups broadens our understanding of end-of-life experience within non-cancer populations and how best to meet their palliative care needs.

The prevalence and severity of symptoms in patients with advanced chronic kidney disease is higher than those of the general population and comparable to those with other chronic and serious medical conditions. Despite the prevalence and severity in this population, symptoms continue to be under-recognized and inadequately managed. The recognition of specific intradialytic pain syndromes such as pain related to arteriovenous access, headaches, muscle cramps or generalized pain by providers may aid in improving patient compliance and quality of life. The approach to pain management in end stage renal disease patients follows that of the general population with specific considerations regarding clearance and potential side effects guiding selection of agents. Overall, evidence is limited regarding the pharmacology of many medications in this population.

Chronic pain in predialysis CKD is not fully understood. This study examined chronic pain in CKD and its relationship with analgesic usage.Data include baseline visits from 308 patients with CKD enrolled between 2011 and 2013 in the Safe Kidney Care cohort study in Baltimore, Maryland. The Wong-Baker FACES Pain Rating Scale measured chronic pain severity. Analgesic prescriptions and over-the-counter purchases were recorded up to 30 days before visits, and were classified as a drug-related problem (DRP) based on an analgesic's nephrotoxicity and dose appropriateness at participants' eGFR. Participants were sorted by pain frequency and severity and categorized into ordinal groups. Analgesic use and the rate of analgesics with a DRP were reported across pain groups. Multivariate regression determined the factors associated with chronic pain and assessed the relationship between chronic pain and analgesic usage.There were 187 (60.7%) participants who reported chronic pain. Factors associated with pain severity included arthritis, taking ≥12 medications, and lower physical function. Use of nonsteroidal anti-inflammatory drugs was reported by seven participants (5.8%) with no chronic pain. Mild and severe chronic pain were associated with analgesics with a DRP, with odds ratios of 3.04 (95% confidence interval [95% CI], 1.12 to 8.29) and 5.46 (95% CI, 1.85 to 16.10), respectively. The adjusted rate of analgesics with a DRP per participant increased from the group with none to severe chronic pain, with rates of 0.07 (95% CI, 0.04 to 0.13), 0.12 (95% CI, 0.07 to 0.20) and 0.16 (95% CI, 0.09 to 0.27), respectively.Chronic pain is common in CKD with a significant relationship between the severity of pain and both proper and improper analgesic usage. Screening for chronic pain may help in understanding the role of DRPs in the delivery of safe CKD care.

BACKGROUND There has been little research exploring the experience of dialysis therapy for people living in remote communities. Remote residence location has previously been associated with excess mortality in hemodialysis (HD) patients, suggesting that relocation to a referral center might improve outcomes. It is unknown whether patients view this approach as acceptable. METHODS We studied 121 remote-dwelling chronic HD patients using the time trade-off method applied to hypothetical scenarios. RESULTS Participants indicated that they would trade a median of 6 years of life in their current location (including current social supports) (95% CI 2.25-7) for 10 years of life in a referral center without any of their existing social supports (meaning they would be willing to forgo 4 years of life to remain in their current residence location). When current social supports were assumed to continue in both locations, people were only willing to forego a median of 2 years of life (95% CI 1-4) to remain in their current location. Older participants were much less willing to accept relocation than younger participants; the median time trade-off associated with relocation and without social supports was 2 years for participants aged

There are several studies that evaluate the deleterious impact of pain in patients with CKD. The prevalence of pain has been estimated at approximately 50–70% in patients with advanced CKD. The causes of pain in CKD patients are often unrelated to the renal disease and can be categorized as neuropathic (pain due to nerve damage) or nociceptive (pain due to tissue damage) in nature. There are a variety of validated screening tools available to determine the location, degree, and quality of a patient’s pain and any exacerbating or alleviating factors. These tools include, but are not limited to, the McGill Pain Questionnaire, Edmonton Symptom Assessment System, and the Brief Pain Inventory. A thorough evaluation should be undertaken to determine the underlying etiology of a patient’s acute or chronic pain syndrome. Management of pain can be divided into non-pharmacologic and pharmacologic options. Non-pharmacologic alternatives should be considered before prescribing chronic pain medications. Pharmacologic treatment should follow specific guidelines with careful selection of appropriate analgesics and dose reduction for reduced eGFR, as most commonly used pain medications and their metabolites are renally cleared with a higher risk for adverse events in CKD. Opioids should only be used for severe pain refractory to other measures including non-opioid and adjuvant analgesics. Greater provider awareness and a multidisciplinary approach including assessment and management of concurrent psychosocial issues are likely required to adequately address the pain epidemic in CKD.

A retrospective chart review was conducted in this pilot study of 35 patients who withdrew from dialysis and were followed by a palliative care team. Data included etiology of end-stage renal disease, comorbid illnesses, mode of dialysis and duration, survival time after withdrawal, reason for withdrawal, mental competency, symptom management, and the nature of death. Mean survival time was 10 days. The most frequent symptoms following withdrawal were confusion, agitation, pain and dyspnea. 1/3 of the sample were cognitively impaired at the time of the withdrawal decision. 17% experienced suffering during the withdrawal period, 24% had unrelieved symptoms, 19% psychological distress, while just over 1/3 of patients died alone. With the provision of palliative care, symptom prevalence in the last 24 hours dropped from 53 to 20% for pain, 68 to 33% for agitation and 46 to 26% for dyspnea. Opioids and benzodiazepines were used in the treatment of over 90% of patients. Palliative medicine has the potential to improve the care of patients who discontinue dialysis.

Nephrologists commonly engage in end-of-life decision-making with patients with ESRD and their families. The purpose of this study was to determine the perceived preparedness of nephrologists to make end-of-life decisions and to determine factors that are associated with the highest level of perceived preparedness. The nephrologist members of the Renal Physicians Association (RPA) and the Canadian Society of Nephrology were invited to participate in an online survey of their end-of-life decision-making practices. A total of 39% of 360 respondents perceived themselves as very well prepared to make end-of-life decisions. Age >46 yr, six or more patients withdrawn from dialysis in the preceding year, and awareness of the RPA/American Society of Nephrology (ASN) guideline on dialysis decision-making were independently associated with the highest level of self-reported preparedness. Nephrologists who reported being very well prepared were more likely to use time-limited trials of dialysis and stop dialysis of a patient with permanent and severe dementia. Compared with Americans, Canadian nephrologists reported being equally prepared to make end-of-life decisions, stopped dialysis of a higher number of patients, referred fewer to hospice, and were more likely to stop dialysis of a patient with severe dementia. Nephrologists who have been in practice longer and are knowledgeable of the RPA/ASN guideline report greater preparedness to make end-of-life decisions and report doing so more often in accordance with guideline recommendations. To improve nephrologists’ comfort with end-of-life decision-making, fellowship programs should teach the recommendations in the RPA/ASN guideline and position statement.

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 (KDQOLSF) 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 ¼� 0.73, P < 0.01), effects of kidney disease (R ¼� 0.53, P < 0.01), and burden of kidney disease (R ¼� 0.46, P < 0.01) as well as overall physical health composite (R ¼� 0.58, P < 0.01) and overall mental health composite (R ¼� 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.

Subjective symptom assessment should be a fundamental component of health-related quality of life (HRQL) assessment in end-stage renal disease (ESRD). Unfortunately, no symptom checklist has established reliability or validity in ESRD. We report the validation of a modified Edmonton Symptom Assessment System (ESAS) in 507 dialysis patients who concurrently completed the Kidney Dialysis Quality of Life-Short Form (KDQOL-SF) questionnaire. The ESAS demonstrated a mean of 7.5±2.5 symptoms. The symptoms reported as most severe were tiredness, well-being, appetite, and pain. The overall symptom distress score was strongly correlated with the KDQOL-SF subscales symptom/problem list (r=-0.69, P

Pain is a multidimensional phenomenon with physical, psychological, and social components and is a significant problem for 50% of hemodialysis (HD) patients. Failure to treat pain adequately may lead to disruption in many aspects of life. This study examines the relationship between moderate to severe chronic pain and depression, insomnia, and the desire to withdraw from dialysis in HD patients. In a cross-sectional study of 205 Canadian HD patients, patients completed a questionnaire that included the Brief Pain Inventory, Beck Depression Inventory, and the Pittsburgh Sleep Quality Index. One hundred and three patients (50.2%) reported chronic pain and 85 (41.4%), moderate to severe pain. There was a higher prevalence of depression in patients with moderate or severe chronic pain compared to patients with mild or no pain (34.1% vs. 18.3%, odds ratio [OR]=2.31, P=0.01). Severe irritability, anxiousness, and inability to cope with stress were all more common in patients with pain compared to patients without pain (P

A growing body of literature has shown that chronic pain is common for patients with end-stage renal disease (ESRD), is typically moderate or severe, and impacts virtually every aspect of health-related quality of life. Unfortunately, there is a lack of clinical and research focus in this area in nephrology, and pain in ESRD is undertreated. This article will review the epidemiology of chronic pain in ESRD, discuss basic principles of pain assessment and management, and highlight some of the challenges in pain management in ESRD with the hope of guiding health professionals in the effective management of pain in patients with ESRD.

There has been a dramatic increase in the incidence of ESRD among Aboriginal people in North America. Although peritoneal dialysis (PD) seems to be the dialysis modality of choice for this often rural-dwelling population, few data exist to confirm this. This study was conducted to evaluate rates of PD use, technique failure, and mortality among incident Aboriginal dialysis patients. Adults of white or Aboriginal race who initiated dialysis in three Canadian provinces between January 1, 1990, and December 31, 2000, were included and followed until December 31, 2001. Logistic regression and Cox proportional hazards models were used to examine adjusted associations between Aboriginal race and PD use, technique failure, and mortality. Among the 3823 patients of white (n = 3138; 82.1%) or Aboriginal (n = 685; 17.9%) race, 835 (21.8%) initiated dialysis on PD. After adjustment for age and comorbidity and comparison with white patients, Aboriginal patients were significantly less likely to initiate therapy on PD compared with white patients (odds ratio, 0.51; 95% confidence interval, 0.40 to 0.65), with a nonsignificant trend toward a higher risk for technique failure (hazards ratio, 1.46; 95% confidence interval, 0.95 to 2.23). Adjusted survival among Aboriginal PD patients seemed similar to both white PD patients and Aboriginal patients who were treated with hemodialysis. In summary, among people who were treated with dialysis in Canada, PD was used less frequently in Aboriginal patients than in those of white race. Although Aboriginal patients who initiate dialysis on PD seemed more likely to experience technique failure, their adjusted risk for death was similar to that of white patients. Future studies should address barriers to the initiation and maintenance of PD in the Aboriginal population, especially those who reside in rural locations.

Over the last several decades, despite advances in predialysis care and dialysis technology, people with advanced CKD continue to have a high symptom burden, shortened life expectancy, and substantial physical, emotional, and spiritual suffering ([1][1]). Unfortunately, most nephrologists are not

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.