Quality of Life in Patients with Chronic Kidney Disease Managed with or without Dialysis: An Observational Study.

Background: Emerging research suggests that quality of life (QOL) outcomes, such as maintenance of independence, rather than length of life, are the main priority for many patients with end stage kidney disease (ESKD). There is therefore a need to focus on whether QOL for older patients on dialysis differs significantly from conservative kidney management (CKM). This study aimed to describe the QOL trajectory for patients with ESKD, comparing CKM to dialysis and transplantation. Methods: This retrospective, observational study included all patients who attended the Kidney Supportive Care Clinic at St. George Hospital and had one or more EuroQOL (EQ5D5L) questionnaires between July 2014 and May 2020. Kruskal-Wallis tests compared QOL scores between groups at baseline and 12 months. Wilcoxon signed rank tests compared QOL scores from baseline to 18 months within groups. Chi-squared tests compared proportions of patients reporting problems with QOL "domains" between the groups at baseline and 12 months. McNemar's tests compared changes in proportions of patients reporting problems with QOL "domains" within groups from baseline to 12 months. Results: A total of 604 patients had an initial survey. At baseline, patients who were managed conservatively reported more problems with mobility, self-care, and ability to perform usual activities. However, pain/discomfort and anxiety/depression were no higher in the conservative population. CKM patients reported no significant decline in mobility, self-care, ability to perform their usual activities, pain/discomfort, or anxiety/depression after 12 months or in QOL scores after 18 months compared with the other groups. Conclusions: QOL scores or symptom burdens did not change significantly in patients receiving CKM compared with dialysis, suggesting that appropriately supported CKM can maintain patients' QOL.

Prevalence of Taste Changes and Association with Other Nutrition-Related Symptoms in End-Stage Kidney Disease Patients.

OBJECTIVES: Gastrointestinal symptoms are common in end-stage kidney disease (ESKD) and have been associated with reduced health-related quality of life and malnutrition. The aim of this study is to describe the prevalence of taste changes in an ESKD population and to evaluate whether taste changes are associated with the presence or severity of other nutrition-related symptoms and malnutrition. METHODS: We conducted a retrospective audit of people with ESKD on conservative, nondialysis management or renal replacement therapy who had completed a taste change assessment. Taste change was assessed on a Likert scale from none to overwhelming. Descriptions of taste changes were also collected. Other outcomes included gastrointestinal symptoms collected using the iPOS-renal symptom inventory, nutritional status, and biochemical parameters. RESULTS: In total, 298 patients were included in our analysis. Taste changes were reported in 38% of this cohort. Taste changes were significantly associated with upper gastrointestinal symptoms (nausea, vomiting, anorexia, and dry/sore mouth) and malnutrition. CONCLUSIONS: Our findings indicate that taste changes are highly prevalent and probably under-recognized in ESKD. Further investigation of the association with malnutrition is needed. Future trials are needed to evaluate strategies to manage taste changes in this population.

Moral Distress in Nephrology: Perceived Barriers to Ethical Clinical Care.

Moral distress occurs when individuals are unable to act in accordance with what they believe to be ethically correct or just. It results from a discrepancy between a clinician's perception of "the right thing to do" and what is actually happening and is perpetuated by perceived constraints that limit the individual from speaking up or enacting change. Moral distress is reported by many clinicians in caring for patients with serious illness, including chronic kidney disease and kidney failure. If left unidentified, unexpressed, or unaddressed, moral distress may cause burnout, exhaustion, detachment, and ineffectiveness. At an extreme, moral distress may lead to a desire to abandon the speciality entirely. This article offers an international perspective on moral distress in nephrology in diverse contexts and health care systems. We examine and discuss the sociocultural factors that contribute to moral distress in nephrology and offer suggestions for interventions from individual provider, facility, and health care systems perspectives to reduce the impact of moral distress on nephrology providers.

Nutrition in Renal Supportive Care: Patient-driven and flexible.

Renal Supportive Care is an alternative treatment pathway in advanced chronic kidney disease that is being increasingly adopted, particularly in the elderly. Renal Supportive Care uses principles of palliative care and has been developed to enhance the care for dialysis patients with a high symptom burden and those being managed on a non-dialysis pathway. Nutrition management is often an under-recognized component of care and can play an important role in improving patients' quality of life to reduce symptom burden, support physical function and independence and provide appropriate counselling to patients and their families to ensure the goals of Renal Supportive Care are met. Nutrition interventions need to target patient and treatment goals, with frequent monitoring to ensure patient needs are being met. This review outlines available literature on this topic and suggests some practical ways in which nutrition can be enhanced for these patients.

NURSES' BEREAVEMENT NEEDS AND ATTITUDES TOWARDS PATIENT DEATH: A QUALITATIVE DESCRIPTIVE STUDY OF NURSES IN A DIALYSIS UNIT.

BACKGROUND: Dialysis nurses have a unique relationship with their patients and often require bereavement support should a patient death occur. This study was conducted in 2014 and aimed to explore the attitudes of dialysis nurses to death and dying and to identify suitable bereavement strategies following a death of a patient. METHODS: A purposeful, convenience sample of all nurses employed in the dialysis service completed a demographic profile and The Death Attitudes Profile Revisited (DAP_R) survey. RESULTS: There were 52 responses to the survey (98% response rate). The mean age of the participants was 45 years ± 8.0 years; 87% had >10 years nursing experience. Nurses suggest that debriefing and the use of a counsellor would support them in their grieving process while new graduate nurses appear to require extra support following a patient death. Analysis of the death attitude profile-revised (DAP-R) showed significant relationships between fear of death/death avoidance as well as fear of death/neutral acceptance. Spirituality and religion correlate strongly with 'Approach Acceptance' in this study group. Forty-four percent people who 'approach acceptance' of death can be explained by the strength of religious beliefs. CONCLUSIONS: Many dialysis nurses appear to have strong religious or spiritual belief systems and this contributes to their acceptance of death, although there also appears to be a degree of death avoidance. The study has highlighted the need to provide adequate bereavement support for dialysis nurses.

CKD in elderly patients managed without dialysis: survival, symptoms, and quality of life.

BACKGROUND AND OBJECTIVES: Survival, symptom burden, and quality of life (QOL) are uncertain for elderly patients with advanced CKD managed without dialysis. We examined these outcomes in patients managed with renal supportive care without dialysis (RSC-NFD) and those planned for or commencing dialysis. DESIGN, SETTING, PARTICIPANTS, & MEASUREMENTS: In this prospective observational study, symptoms were measured using the Memorial Symptom Assessment Scale and the Palliative care Outcomes Scale - Symptoms (renal) inventory and QOL was measured using the Short Form-36 survey. This study comprised 273 predialysis patients who had usual nephrology care and 122 nondialysis pathway patients who also attended a renal supportive care clinic adding the skills of a palliative medicine team. A further 72 patients commenced dialysis during this period without attending either clinic. RESULTS: Nondialysis patients were older than the predialysis group (82 versus 67 years; P<0.001) but had similar eGFR at the first clinic visit (16 ml/min per 1.73 m(2); P=0.92). Of the predialysis patients, 92 (34%) commenced dialysis. Compared with the RSC-NFD group, the death rate was lower in the predialysis group who did not require dialysis (hazard ratio, 0.23; 95% confidence interval, 0.12 to 0.41] and in those requiring dialysis (0.30; 0.13 to 0.67) but not in dialysis patients who had not attended the predialysis clinic (0.60; 0.35 to 1.03). Median survival in RSC-NFD patients was 16 (interquartile range, 9, 37) months and 32% survived >12 months after eGFR fell below 10 ml/min per 1.73 m(2). For the whole group, age, serum albumin, and eGFR <15 ml/min per 1.73 m(2) were associated with poorer survival. Of the nondialysis patients, 57% had stable or improved symptoms over 12 months and 58% had stable or improved QOL. CONCLUSIONS: Elderly patients who choose not to have dialysis as part of shared decision making survive a median of 16 months and about one-third survive 12 months past a time when dialysis might have otherwise been indicated. Utilizing the skills of palliative medicine helps provide reasonable symptom control and QOL without dialysis.

Efficacy and safety of gabapentin for uremic pruritus and restless legs syndrome in conservatively managed patients with chronic kidney disease.

CONTEXT: Pruritus and restless legs syndrome (RLS) frequently affect patients with chronic kidney disease (CKD) and end-stage kidney disease (ESKD), impacting the quality of life. Gabapentin (1-aminomethyl cyclohexane acetic acid) alleviates these symptoms in hemodialysis (HD) patients, but data are lacking for patients on the conservative pathway. OBJECTIVES: To determine the safety and effectiveness of gabapentin for pruritus or RLS in conservatively managed patients (n = 34) with CKD and ESKD. METHODS: This was a single-center retrospective cohort study. We compared dosing and side effects in 34 CKD/ESKD patients with similar patients receiving HD (n = 15). RESULTS: Forty-four percent of conservatively managed patients complained of RLS and/or pruritus; 18% were excluded for a nonuremic cause of symptom. Thirty-four patients were included in the final analysis. The most common starting daily dose of gabapentin was the equivalent of 50 mg (44.1%) or 100 mg (38.2%) daily, with the median daily dose of 100 mg (range 39-455 mg). Side effects occurred in 47% of patients, with 17% discontinuing gabapentin. Gabapentin reduced symptoms of pruritus (P < 0.001) and RLS (P < 0.05). There was no statistical difference when comparing HD and conservatively managed patients for daily starting dose (P = 0.88), median dose (P = 0.84), and final dose (P = 0.18). Patients conservatively managed were more likely to manifest side effects compared with HD patients (47.1% vs. 14.3%, P = 0.023). Dose was not found to be a factor associated with side effects in univariate analysis. CONCLUSION: Gabapentin is a viable treatment for conservatively managed CKD and ESKD patients with pruritus and/or RLS, but side effects are common. Gabapentin should be used with caution although higher doses do not appear to be a factor associated with side effects.

Quality of Life. What information is already available and what evidence is this based on?

Patients with ESKD are known to have a worse QOL than age-matched general population What constitutes a poor QOL of life varies from person to person and the potential impact of dialysis on an individual will be unique for each person Patients need good information in order to allow them to assess the potential impact of RRT on their lives The SF-36 QOL questionnaire is a suitable tool to be used in dialysis and non-dialysis patients to assess QOL changes.

Cardiac high-sensitivity troponin T measurement: a layer of complexity in managing haemodialysis patients.

AIM: To determine: (i) the proportion of stable asymptomatic haemodialysis patients with elevated troponin; (ii) stability of troponin values after dialysis and over a 2-week interval; and (iii) whether high-sensitivity troponin T (hsTnT) was associated with higher prevalence of cardiovascular risk factors or cardiovascular disease in these patients. METHODS: We measured hsTnT and the fourth generation troponin I before and after dialysis in 103 stable in-centre haemodialysis patients without ischaemic symptoms. Patients were divided into quartiles to test for associations with established cardiovascular risk factors or disease. RESULTS: hsTnT was above the 99th percentile for the general population in 99% of haemodialysis patients compared with only 13% elevation for the troponin I assay (P < 0.001). Median pre-dialysis hsTnT concentrations were unchanged after a 2-week interval (69 vs 69 ng/L, P = 0.55) but fell slightly immediately following dialysis (69 vs 61 ng/L, P < 0.001). Established coronary artery disease (59% vs 22%), peripheral vascular disease (38% vs 4%) and diabetes (18% vs 7%) were more prevalent (P < 0.05) in those in the highest quartile for hsTnT compared with those in the lowest quartile. CONCLUSION: Almost all in-centre haemodialysis patients have elevated troponin T in their baseline stable state and this appears unchanged over a 2-week interval. Such a high rate of baseline elevation of hsTnT may lead to confusion in managing acute coronary syndrome in this group of patients, particularly when symptoms are atypical. We recommend that if Troponin I assay is unavailable then baseline hsTnT concentrations are measured periodically in all haemodialysis patients.