Impact of COVID-19 on patient experience of kidney care: a rapid review.

INTRODUCTION: In March 2020, a pandemic state was declared due to SARS-COV-2 (COVID-19). Patients with kidney disease, especially those on replacement therapies, proved more susceptible to severe infection. This rapid literature review aims to help understand how the pandemic impacted patient experience of kidney care. METHODS: It was conducted in accordance with Cochrane Rapid Review interim guidance. Search terms, 'coronavirus', 'kidney care', and 'patient-reported experience' and terms with similar semantic meaning, identified 1,117 articles in Medline, Scopus, and Worldwide Science. Seventeen were included in the narrative synthesis. RESULTS: The findings were summarised into three themes: remote consultation and telemedicine (n = 9); psychosocial impact (n = 2); and patient satisfaction and patient-reported experience (n = 6). Patients were mostly satisfied with remote consultations, describing them as convenient and allowing avoidance of hospital visits. Anxieties included missing potentially important clinical findings due to lack of physical examination, poor digital literacy, and technical difficulties. Psychosocial impact differed between treatment modalities-transplant recipients expressing feelings of instability and dread of having to return to dialysis, and generally, were less satisfied, citing reduced ability to work and difficulty accessing medications. Those on home dialysis treatments tended to feel safer. Findings focused on aspects of patient experience of kidney care during the pandemic rather than a holistic view. CONCLUSIONS: There was little direct evaluation of modality differences and limited consideration of health inequalities in care experiences. A fuller understanding of these issues would guide policy agendas to support patient experience during future public health crises.

The use of culturally adapted and translated depression screening questionnaires with South Asian haemodialysis patients in England.

BACKGROUND: Depression is common amongst patients receiving haemodialysis (HD). Assessment and intervention when faced with language and cultural barriers is challenging. To support clinician decisions, we conducted a cross-sectional study to assess the use of culturally adapted and translated versions of commonly-used depression screening questionnaires with South Asian patients receiving HD in England. METHODS: Patients completed adapted versions of the Patient Health Questionnaire (PHQ-9), the Centre for Epidemiological Studies Depression Scale Revised (CESD-R), and the Beck Depression Inventory II (BDI-II). All questionnaires were available in Gujarati, Punjabi, Urdu, and Bengali. A comparative sample of white-Europeans completed the questionnaires in English. The research was based across 9 National Health Service (NHS) Trusts in England. Structural validity of translated questionnaires was assessed using confirmatory factor analysis. Diagnostic accuracy was explored in a subgroup of South Asians against ICD-10 categories using the Clinical Interview Schedule Revised (CIS-R) with receiver operating curve (ROC) analysis. RESULTS: 229 South Asian and 120 white-European HD patients participated. A single latent depression factor largely accounted for the correlations between items of the PHQ-9, CESD-R and BDI-II. Issues with measurement equivalence implied that scores on the translations may not be comparable with the English language versions. Against CIS-R based ICD-10 diagnosis of depression, sensitivity was modest across scales (50-66.7%). Specificity was higher (81.3-93.8%). Alternative screening cut-offs did not improve positive predictive values. CONCLUSIONS: Culturally adapted translations of depression screening questionnaires are useful to explore symptom endorsement amongst South Asian patients. However, data indicate that standard cut-off scores may not be appropriate to classify symptom severity. Use of the CIS-R algorithms for optimal case identification requires further exploration in this setting. Strategies to encourage recruitment of under-represented groups in renal research are also warranted, especially for in-depth discussions related to psychological care needs.

Outcomes and care priorities for older people living with frailty and advanced chronic kidney disease: a multiprofessional scoping review protocol.

INTRODUCTION: Reported outcomes for older people with advanced chronic kidney disease (CKD) often focus on survival and mortality and little attention is paid to symptom burden and health-related quality of life. Recognising frailty and providing interventions that may improve outcomes have been studied in the general population with a growing research interest within CKD. METHODS AND ANALYSIS: A scoping review will be undertaken following a recommended process to understand relevant research and priorities for older people living with frailty and advanced CKD. Databases will be searched and following a systematic process by a core team, a final list of included studies will be analysed. Focus groups will then be conducted with older people with advanced CKD to incorporate stakeholder views. ETHICS AND DISSEMINATION: Our scoping review will use robust methodology to identify relevant literature focused on outcomes and care priorities for older people with advanced CKD. Ethical approval will be sought to conduct the focus groups. The result of this review will be disseminated through patient networks and national conferences. The interdisciplinary team collaborating plan to continue work in this area to improve the care and management of older people with advanced CKD.

Feasibility Trial of Cognitive Behavioral Therapy for Fatigue in Hemodialysis (BReF Intervention).

CONTEXT: Fatigue affects at least half of patients who are on hemodialysis (HD) with considerable repercussions on their functioning, quality of life, and clinical outcomes. OBJECTIVES: This study assessed the feasibility, acceptability, and potential benefits of a cognitive behavioral therapy intervention for renal fatigue (BReF intervention). METHODS: This was a feasibility randomized controlled trial of the BReF intervention vs. waiting-list control. Outcomes included recruitment, retention, and adherence rates. Exploratory estimates of treatment effect were computed. The statistician was blinded to allocation. RESULTS: Twenty-four prevalent HD patients experiencing clinical levels of fatigue were individually randomized (1:1) to BReF (N = 12) or waiting-list control arms (N = 12). Fifty-three (16.6%; 95% CI = 12.7-21.1) of 320 patients approached consented and completed the screening questionnaire. It was necessary to approach 13 patients for screening for every one patient randomized. The rate of retention at follow-up was 75% (95% CI = 53.29-90.23). Moderate to large treatment effects were observed in favor of BReF on fatigue severity, fatigue-related functional impairment, depression, and anxiety (standardized mean difference [SMD]g = 0.81; SMDg = 0.93; SMDg = 0.38; SMDg = 0.42, respectively) but not sleep quality (SMDg = -0.31). No trial adverse events occurred. CONCLUSION: There was promising evidence in support of the need and benefits of a cognitive behavioral therapy-based intervention for fatigue in HD. However, uptake was low, possibly as a result of an already high treatment burden in this setting. Considerations on the context of delivery are necessary before pursuing a definitive trial.

How do patients from South Asian backgrounds experience life on haemodialysis in the UK? A multicentre qualitative study.

OBJECTIVES: End-stage kidney disease disproportionately affects people of South Asian origin. This study aimed to uncover the lived experiences of this group of patients on centre-based haemodialysis (HD), the most prevalent dialysis modality. DESIGN: The study utilised a qualitative focus group methodology. Seven focus groups were conducted across four NHS Trusts in the UK including three in Gujarati and two each in Punjabi and Urdu. This provided an inclusive opportunity for South Asian patients to contribute in their language of origin. A total of 24 patients participated. Focus groups were facilitated by bilingual project workers and data were forward translated and analysed using thematic analysis. RESULTS: Four themes were identified. This included (1) 'treatment imposition', which comprised of the restrictive nature of HD, the effects of treatment and the feeling of being trapped in an endless process. (2) The 'patient-clinician relationship' centred around the impact of a perceived lack of staff time, and inadequacies in the quality of interactions. (3) 'Coping strategies' highlighted the role of cognitive reappraisal, living in the moment and family support networks in facilitating adjustment. (4) 'Pursuit of transplantation' included equating this form of treatment with restoring normality, alongside cultural factors limiting hopefulness for receiving an organ. CONCLUSIONS: In general, the experiences of South Asian patients receiving HD were not unique to this ethnic group. We did find distinct issues in relation to interactions with healthcare professionals, views on access to transplantation and the importance of family support networks. The study provides useful insights which may help enhance culturally tailored renal care.

Reflections and experiences of a co-researcher involved in a renal research study.

BACKGROUND: Patient and Public Involvement (PPI) is seen as a prerequisite for health research. However, current Patient and public involvement literature has noted a paucity of recording of patient and public involvement within research studies. There have been calls for more recordings and reflections, specifically on impact. Renal medicine has also had similar criticisms and any reflections on patient and public involvement has usually been from the viewpoint of the researcher. Roles of patient and public involvement can vary greatly from sitting on an Advisory Group to analysing data. Different PPI roles have been described within studies; one being a co-researcher. However, the role of the co-researcher is largely undefined and appears to vary from study to study. METHODS: The aims of this paper are to share one first time co-researcher's reflections on the impact of PPI within a mixed methods (non-clinical trial) renal research study. A retrospective, reflective approach was taken using data available to the co-researcher as part of the day-to-day research activity. Electronic correspondence and documents such as meeting notes, minutes, interview thematic analysis and comments on documents were re-examined. The co-researcher led on writing this paper. RESULTS: This paper offers a broad definition of the role of the co-researcher. The co-researcher reflects on undertaking and leading on the thematic analysis of interview transcripts, something she had not previously done before. The co-researcher identified a number of key themes; the differences in time and responsibility between being a co-researcher and an Advisory Group member; how the role evolved and involvement activities could match the co-researchers strengths (and the need for flexibility); the need for training and support and lastly, the time commitment. It was also noted that it is preferable that a co-researcher needs to be involved from the very beginning of the grant application. CONCLUSIONS: The reflections, voices and views of those undertaking PPI has been largely under-represented in the literature. The role of co-researcher was seen to be rewarding but demanding, requiring a large time commitment. It is hoped that the learning from sharing this experience will encourage others to undertake this role, and encourage researchers to reflect on the needs of those involved.

Cognitive-behavioural therapy (CBT) for renal fatigue (BReF): a feasibility randomised-controlled trial of CBT for the management of fatigue in haemodialysis (HD) patients.

INTRODUCTION: Fatigue is one of the most common and disabling symptoms in end-stage kidney disease, particularly among in-centre haemodialysis patients. This two-arm parallel group feasibility randomised controlled trial will determine whether a fully powered efficacy trial is achievable by examining the feasibility of recruitment, acceptability and potential benefits of a cognitive-behavioural therapy (CBT)-based intervention for fatigue among in-centre haemodialysis patients. METHODS: We aim to recruit 40 adult patients undergoing in-centre haemodialysis at secondary care outpatient dialysis units, who meet clinical levels of fatigue. Patients will be randomised individually (using a 1:1 ratio) to either a 4-6 weeks' CBT-based intervention (intervention arm) or to a waiting-list control (control arm). The primary feasibility outcomes include descriptive data on numbers within each recruiting centre meeting eligibility criteria, rates of recruitment, numbers retained postrandomisation and treatment adherence. To assess the potential benefits of the cognitive-behavioural therapy for renal fatigue intervention, secondary self-report outcomes include measures of fatigue severity (Chalder Fatigue Questionnaire), fatigue-related functional impairment (Work and Social Adjustment Scale), sleep quality (Pittsburgh Sleep Quality Index), depression (Patient Health Questionnaire-9) and anxiety (Generalised Anxiety Disorder-7). Changes in fatigue perceptions (Brief Illness Perception Questionnaire), cognitive and behavioural responses to fatigue (Cognitive and Behavioural Responses to Symptoms Questionnaire), sleep hygiene behaviours (Sleep Hygiene Index) and physical activity (International Physical Activity Questionnaire-short form) will also be explored. These self-report measures will be collected at baseline and 3 months postrandomisation. Nested qualitative interviews will be conducted postintervention to explore the acceptability of the intervention and identify any areas in need of improvement. The statistician and assessor will be blinded to treatment allocation. ETHICS AND DISSEMINATION: A National Health Service (NHS) Research Ethics Committee approved the study. Any amendments to the protocol will be submitted to the NHS Committee and study sponsor. TRIAL REGISTRATION NUMBER: ISRCTN91238019;Pre-results.

Postdialysis recovery time is extended in patients with greater self-reported depression screening questionnaire scores.

INTRODUCTION: Most patients take time to recover after a hemodialysis (HD) session. It has been suggested that recovery time is associated with intradialytic hypotension and rapid solute clearances. Other studies have reported a linkage to depression. We investigated the association between recovery time and intradialytic hypotension and depression. METHODS: In five UK HD units, we screened for depressive symptoms using the Beck depression inventory-II, Patient Health Questionnaire, and recorded sessional blood pressures and Kt/Vurea. FINDINGS: Seven hundred and one HD patients were studied; 63.6% male, mean age 64.1 ± 16.6 years, 33.5% diabetic. About 24.1% recovered in <1 hour, 27% 1-4 hours, 15.4% 4-8 hours, 10.7% 8-12 hours, and 22.8% after 12 hours. Systolic blood pressure fell by ≥20 mmHg in 30.9% postdialysis, and to <100 mmHg in 7.6%. In multivariate analysis, patients with recovery times >1 hour were more likely to be female, have high self-reported Beck depression inventory-II scores, a past medical history of depression, and be living without a partner. Longer recovery times were also associated with very low postdialysis systolic blood pressures (<100 mmHg), and higher body weight. However, the model predicted only 18% of the variation in recovery times. We found no association between recovery times and short-term mortality risk. DISCUSSION: Prolonged postdialysis recovery times are associated with higher self-reported depression scores, and very low postdialysis blood pressure. Future studies investigating changes in dialysis practice and recovery times will need to target strategies to prevent intradialytic hypotension and adjust for patient psychological status.

Depression Symptoms in Haemodialysis Patients Predict All-Cause Mortality but Not Kidney Transplantation: A Cause-Specific Outcome Analysis.

Background: Depression is common in haemodialysis (HD) patients and associated with poor outcomes. Purpose: To evaluate whether depression symptoms predict survival and transplantation in a large sample of haemodialysis patients using cause-specific survival models. Methods: Survival data was collected between April 2013 and November 2015, as part of the screening phase of a multicentre randomised placebo-controlled trial of sertraline in HD patients. Depression was measured using the Beck Depression Inventory-II (BDI-II) and the Patient Health Questionnaire-9 (PHQ-9). Demographic and clinical data were collected via a self-report questionnaire and medical records. Competing risk survival analysis involved cause-specific and subdistribution hazard survival models. All models were adjusted for appropriate covariates including co-morbidity and C-reactive protein (CRP) in a subanalysis. Results: Of 707 cases available for analysis, there were 148 deaths. The mean survival time was 787.5 days. Cumulative survival at 12 months was 88.5%. During the study follow-up period, there were 92 transplants. The cumulative transplant event rate at 12 months was 7.8%. In separate adjusted models, depression symptoms predicted mortality (BDI-II HR = 1.03 95% CI 1.01, 1.04; PHQ-9 HR = 1.04 95% CI 1.01, 1.06). With respect to screening cut-off scores, a PHQ-9 ≥ 10 was associated with mortality (HR = 1.51 95% CI 1.01, 2.19) but not a BDI-II ≥ 16. Depression symptoms were not associated with time to transplantation in either cause-specific or subdistribution model. Conclusions: Consistent with past findings in HD patients, depression symptoms predicted survival but were not associated with kidney transplantation. Suitable treatments for depression need further evaluation, and their impact upon quality of life and clinical outcomes determined. Trial Registration Number: (ISRCTN06146268).

Time, timing, talking and training: findings from an exploratory action research study to improve quality of end of life care for minority ethnic kidney patients.

Background. With an ageing and increasingly diverse population at risk from rising levels of obesity, diabetes and cardiovascular disease, including kidney complications, there is a need to provide quality care at all stages in the care pathway including at the end of life and to all patients. Aim. This study purposively explored South Asian patients' experiences of kidney end of life care to understand how services can be delivered in a way that meets diverse patient needs. Methods. Within an action research design 14 focus groups (45 care providers) of kidney care providers discussed the recruitment and analysis of individual interviews with 16 South Asian kidney patients (eight men, eight women). Emergent themes from the focus groups were analysed thematically. The research took place at four UK centres providing kidney care to diverse populations: West London, Luton, Leicester and Bradford. Results. Key themes related to time and the timing of discussions about end of life care and the factors that place limitations on patients and providers in talking about end of life care. Lack of time and confidence of nurses in areas of kidney care, individual attitudes and workforce composition influence whether and how patients have access to end of life care through kidney services. Conclusion. Training, team work and time to discuss overarching issues (including timing and communication about end of life) with colleagues could support service providers to facilitate access and delivery of end of life care to this group of patients.

Sertraline Versus Placebo in Patients with Major Depressive Disorder Undergoing Hemodialysis: A Randomized, Controlled Feasibility Trial.

BACKGROUND AND OBJECTIVES: Depression is common in patients on hemodialysis, but data on the benefits and risks of antidepressants in this setting are limited. We conducted a multicenter, randomized, double-blind, placebo-controlled trial of sertraline over 6 months in patients on hemodialysis with depression to determine study feasibility, safety, and effectiveness. DESIGN, SETTING, PARTICIPANTS, & MEASUREMENTS: Patients on hemodialysis at five United Kingdom renal centers completed the Beck Depression Inventory II. Those scoring ≥16 and not already on treatment for depression were invited to undergo diagnostic interview to confirm major depressive disorder. Eligible patients with major depressive disorder were randomized to receive the study medication-either sertraline or placebo. Outcomes included recruitment and dropout rates, change in the Montgomery-Asberg Depression Rating Scale and Beck Depression Inventory II, and qualitative information to guide design of a large-scale trial. RESULTS: In total, 709 patients were screened and enrolled between April of 2013 and October of 2014; 231 (32.6%) had Beck Depression Inventory II scores ≥16, and 68 (29%) of these were already receiving treatment for depression. Sixty-three underwent diagnostic interview, 37 were diagnosed with major depressive disorder, and 30 were randomized; 21 completed the trial: eight of 15 on sertraline and 13 of 15 on placebo (P=0.05). Dropouts due to adverse and serious adverse events were greater in the sertraline group. All occurred in the first 3 months. Over 6 months, depression scores improved in both groups. Beck Depression Inventory II score fell from 29.1±8.4 to 17.3±12.4 (P<0.001), and Montgomery-Asberg Depression Rating Scale score fell from 24.5±4.1 to 10.3±5.8 (P<0.001). There were no differences between sertraline and placebo groups. CONCLUSIONS: Although small, this is the largest randomized trial to date of antidepressant medication in patients on hemodialysis. Our results highlight recruitment issues. No benefit was observed, but trial size and the substantial dropout render consideration of benefit inconclusive. A definitive trial could use shorter follow-up and include depressed patients already taking antidepressants.

Rate of Decline of Kidney Function, Modality Choice, and Survival in Elderly Patients with Advanced Kidney Disease.

AIM: In elderly, dependent patients with advanced chronic kidney disease, dialysis may confer only a small survival advantage over conservative kidney management (CKM). We investigated the role of rate of decline of kidney function on treatment choices and survival. METHODS: We identified a retrospective (1995-2010) cohort of patients aged over 75 years, with progressive kidney impairment and an estimated glomerular filtration rate (eGFR) between 10 and 15 ml/min/1.73 m2. All subsequently chose to be treated by either dialysis or CKM. Patients were followed for a minimum of 3 years. RESULTS: Of 250 patients identified, 92 (37%) opted for dialysis and 158 (63%) for CKM. Mean age was 80.9 ± 4.0 years. eGFR was 13.3 ± 1.4 initially and 8.7 ± 3.0 ml/min/1.73 m2 at follow-up. Both were similar in those on dialysis and CKM pathways. Rate of decline of eGFR was more rapid in those choosing dialysis (0.45 (interquartile range, IQR 0.64) vs. 0.21 (IQR 0.28) ml/min/1.73 m2/month, p < 0.001), and independently predicted choice of CKM. In patients with high comorbidity, choice of dialysis was associated with a non-significant adjusted survival advantage of 5 months. Inclusion in models of time dependent eGFR during follow-up (eGFRtd) - a reflection of the rate of decline of kidney function - showed it to be independently associated with mortality risk in those on the CKM (p < 0.001) but not on the dialysis pathway. CKM pathway patients at the 25th centile of eGFRtd had an adjusted survival of 7 months compared to 63 months for those at the 75th centile. CONCLUSIONS: Rate of decline of kidney function is a determinant of CKM choice in elderly patients and is associated with mortality risk in patients of the CKM pathway. These findings should inform counselling.

Exploring access to end of life care for ethnic minorities with end stage kidney disease through recruitment in action research.

BACKGROUND: Variation in provision of palliative care in kidney services and practitioner concerns to provide equitable access led to the development of this study which focussed on the perspectives of South Asian patients and their care providers. As people with a South Asian background experience a higher risk of Type 2 Diabetes (T2DM) and end stage kidney failure (ESKF) compared to the majority population but wait longer for a transplant, there is a need for end of life care to be accessible for this group of patients. Furthermore because non English speakers and people at end of life are often excluded from research there is a dearth of research evidence with which to inform service improvement. This paper aims to explore issues relating to the process of recruitment of patients for a research project which contribute to our understanding of access to end of life care for ethnic minority patients in the kidney setting. METHODS: The study employed an action research methodology with interviews and focus groups to capture and reflect on the process of engaging with South Asian patients about end of life care. Researchers and kidney care clinicians on four NHS sites in the UK recruited South Asian patients with ESKF who were requiring end of life care to take part in individual interviews; and other clinicians who provided care to South Asian kidney patients at end of life to take part in focus groups exploring end of life care issues. In action research planning, action and evaluation are interlinked and data were analysed with emergent themes fed back to care providers through the research cycle. Reflections on the process of patient recruitment generated focus group discussions about access which were analysed thematically and reported here. RESULTS: Sixteen patients were recruited to interview and 45 different care providers took part in 14 focus groups across the sites. The process of recruiting patients to interview and subsequent focus group data highlighted some of the key issues concerning access to end of life care. These were: the identification of patients approaching end of life; and their awareness of end of life care; language barriers and informal carers' roles in mediating communication; and contrasting cultures in end of life kidney care. CONCLUSIONS: Reflection on the process of recruitment in this action research study provided insight into the complex scenario of end of life in kidney care. Some of the emerging issues such as the difficulty identifying patients are likely to be common across all patient groups, whilst others concerning language barriers and third party communication are more specific to ethnic minorities. A focus on South Asian ethnicity contributes to better understanding of patient perspectives and generic concepts as well as access to end of life kidney care for this group of patients in the UK. Action research was a useful methodology for achieving this and for informing future research to include informal carers and other ethnic groups.

Evidence of improved fluid management in patients receiving haemodialysis following a self-affirmation theory-based intervention: A randomised controlled trial.

OBJECTIVE: Haemodialysis patients are at risk of serious health complications; yet, treatment non-adherence remains high. Warnings about health risks associated with non-adherence may trigger defensive reactions. We studied whether an intervention based on self-affirmation theory reduced resistance to health-risk information and improved fluid treatment adherence. DESIGN: In a cluster randomised controlled trial, 91 patients either self-affirmed or completed a matched control task before reading about the health-risks associated with inadequate fluid control. OUTCOME MEASURES: Patients' perceptions of the health-risk information, intention and self-efficacy to control fluid were assessed immediately after presentation of health-risk information. Interdialytic weight gain (IDWG), excess fluid removed during haemodialysis, is a clinical measure of fluid treatment adherence. IDWG data were collected up to 12 months post-intervention. RESULTS: Self-affirmed patients had significantly reduced IDWG levels over 12 months. However, contrary to predictions derived from self-affirmation theory, self-affirmed participants and controls did not differ in their evaluation of the health-risk information, intention to control fluid or self-efficacy. CONCLUSION: A low-cost, high-reach health intervention based on self-affirmation theory was shown to reduce IDWG over a 12-month period, but the mechanism by which this apparent behaviour change occurred is uncertain. Further work is still required to identify mediators of the observed effects.

You cannot choose your family: sociological ambivalence in the hemodialysis unit.

Living with end-stage renal disease is challenging and requires a great deal of self-management, but little is known about the experiences of patients and staff around the subject. We held six focus groups in three hemodialysis units, each unit hosting 1 staff and 1 patient focus group. A total of 15 staff members and 15 patients participated. We employed thematic analysis using a priori and emerging codes. Five key themes emerged: challenges, enablers, complex balancing acts, good patient/bad patient, and the hemodialysis unit as a family. We explored the family metaphor further through the work of Bourdieu, but concluded that relationships in the hemodialysis unit most closely fit the concept of sociological ambivalence. We present an explanatory framework around inherent tensions characterizing relationships within the hemodialysis unit and highlight implications for facilitating self-management and developing collaborative approaches to care.

Communication as care at end of life: an emerging issue from an exploratory action research study of renal end-of-life care for ethnic minorities in the UK.

South Asian people have a higher risk of developing kidney disease, are disproportionately represented in the patient population requiring renal replacement therapy and wait longer to receive a kidney transplant, compared with white Europeans. As a result, there is a demand for end-of-life care, which meets the needs of this group of patients. Providing end-of-life care to patients from different cultures is a challenge for renal services as there can be barriers to communication in the form of language, delegated decision-making within families and reluctance to discuss death. To explore end-of-life care for South Asians with kidney disease, 16 interviews with patients and 14 focus groups with care providers were conducted at four research sites in the UK with large South Asian populations. Using an action research design the data were analysed thematically and fed back to inform the research in a cyclical manner. If patients are not fully aware of their condition or of what end-of-life care is, it is less likely that they will be able to be involved in decision-making about their care and this is compounded where there are communication barriers. Variations in care provider awareness and experience of providing end-of-life care to South Asian patients, in turn, contributes to lack of patient awareness of end-of-life care. Communication as care at the end of life should be explored further. Researching the South Asian patient experience of end of life highlights many relevant and generalisable issues.

Supportive care in advanced kidney disease: patient attitudes and expectations.

Treatment with dialysis has benefitted large numbers of patients with advanced kidney disease. It is though highly intrusive and demanding and some elderly, frail patients may tolerate it poorly. Some of these patients who are either approaching 'end-stage' kidney disease or 'failing' despite being on dialysis may choose to pursue supportive or palliative approaches, partially or fully replacing the dialysis option. Here, we describe some of the challenges confronting these patients and present data on the attitudes and perceptions to supportive care and end-of-life care planning of patients on haemodialysis including some whose prognosis was poor. The main focus for these patients appeared to be on holding on to what they had, adapting by living 'from day to day' in the present, and continuing to hope for the best. Advance care planning was seen as potentially useful by patients, once clarity surrounding its purpose had been established.

How robust is the 'surprise question' in predicting short-term mortality risk in haemodialysis patients?

BACKGROUND/AIMS: The 'surprise question' (SQ) may aid timely identification of patients with end-of-life care needs. We assessed its prognostic value and variability among clinicians caring for a cohort of haemodialysis (HD) patients. METHODS: Clinicians (29 nurses and 6 nephrologists) in each of our 3 HD units were asked to pose the SQ concerning all patients dialysing in their unit. There were 344 patients, 116 in Unit 1, 132 in Unit 2 and 96 in Unit 3. RESULTS: An adverse SQ response: 'I would not be surprised if this patient were to die in the next 12 months' was reported by individual clinicians for between 6 and 43% of patients (mean 24 ± 9%). Nephrologists responded adversely for more patients than nurses did. Fifty-two patients died during the 12 months of follow-up. There were wide variations between clinicians in the predictive power of SQ responses. Mean odds ratios were significantly higher for nephrologists than for nurses. SQ responses of 49% of clinicians improved baseline models of 12-month mortality, more so for nephrologists (67%) than for senior nurses (50%) and nurses of lesser seniority (36%). Unit performance differed significantly. Agreements between clinicians on SQ responses improved the positive predictive value, i.e. the more clinicians agreed on an adverse response, the greater its predictive power. CONCLUSION: SQ provides a unique contribution to the prediction of short-term prognosis in HD patients, though predictive power varies with clinical discipline, seniority and clinical setting. Agreements between clinicians on adverse responses may have clinical utility.

Exploring the views of patients not on the transplant waiting list: a qualitative study.

BACKGROUND: Not all patients are suitable for kidney transplantation; however, little is known about the views and attitudes of patients who are not on the waiting list for transplantation. OBJECTIVE: This study aimed to determine the views and attitudes of patients who are not on the waiting list regarding the process of transplant allocation. METHODS: A grounded theory approach was used to develop theories from patient views, opinions and attitudes. Patients receiving dialysis, and not on the waiting list at a United Kingdom renal unit were identified by the renal counsellor and invited to take part. Five patients formed a focus group to enable construction of an interview schedule. Patients (n=10, different from those in the focus group) were interviewed until themes became saturated. Interview transcripts generated conceptual categories. RESULTS: Seven conceptual categories emerged regarding access to transplantation. Patients experience emotions of loss relating to transplantation exacerbated by restrictions imposed by dialysis. Patients find coping mechanisms, accept their situation and trust that clinical decisions were equitable. CONCLUSIONS: Patients trust their carers and support an efficacy argument when considering scarce resources. Communication should be improved to ensure clarity and understanding of clinical decisions.

Recent insights into life expectancy with and without dialysis.

PURPOSE OF REVIEW: Elderly patients comprise the fastest growing population initiating dialysis and also experience the worst outcomes, including increased mortality, loss of functional status, and impaired quality of life. Nephrologists are often challenged with how best to engage in dialysis decision-making discussions within this population. Prognostication tools can assist nephrologists in engaging in these discussions, especially in patients for whom survival benefits may be outweighed by the burdens of treatment. RECENT FINDINGS: This review includes the latest research in the survival of elderly patients with and without dialysis; prognostic factors associated with renal progression and survival; and integrative prognostic models to predict both short-term and long-term prognosis. The concept of kidney illness disease trajectory is defined with important outcomes including survival, health-related quality of life, and symptoms with and without dialysis. This prognostic information will then be integrated into an individualized approach to shared decision-making regarding treatment decision-making.(Figure is included in full-text article.) SUMMARY: Treatment decision-making for elderly patients with advanced kidney disease necessitates an active process between nephrologist and patient, incorporating medical information as well as patient preferences. Prognostic information and observational data can facilitate nephrologists' ability to foresee and foretell the illness trajectory both with and without dialysis, further guiding these conversations.