Decisional needs in people with kidney failure, their relatives and health professionals about end-of-life care options: A qualitative interview study.

AIM: To investigate the decisional needs in Denmark of people with kidney failure, relatives, and health professionals when planning end-of-life care. DESIGN: A qualitative interview study. METHODS: Individual semi-structured interviews were carried out with people with kidney failure, relatives and health professionals from November 2021 to June 2022. Malterud's systematic text condensation was used to analyse transcripts. RESULTS: A total of 13 patients, 10 relatives, and 12 health professionals were interviewed. Overall, four concepts were agreed on: (1) Talking about end of life is difficult, (2) Patients and relatives need more knowledge and information, (3) Health professionals need more tools and training, and (4) Experiencing busyness as a barrier to conversations about end of life. CONCLUSION: People with kidney failure, relatives, and health professionals shared certain decisional needs while also having some different decisional needs about end-of-life care. To meet these various needs, end-of-life conversations should be systematic and organized according to the patients' needs and wishes. IMPACT: Non-systematic end-of-life care decision-making processes limit patients' involvement. Patients and relatives need more knowledge about end-of-life care, and health professionals need more competences and time to discuss decisional needs. A shared decision-making intervention for people with kidney failure when making end-of-life care decisions will be developed. REPORTING METHOD: This empirical qualitative research is reported according to the Consolidated Criteria for Reporting Qualitative Research (COREQ) checklist. PATIENT OR PUBLIC CONTRIBUTION: Patients, relatives, and health professionals have been involved throughout the research process as part of the research team and advisory board. The patients are people with kidney failure and the relatives are relatives of a person with kidney failure. For this study, the advisory board has particularly contributed to the validation of the invitation letter for participation, the interview guides and the preparation of the manuscript.

Shared decision making for patients with kidney failure to improve end-of-life care: Development of the DESIRE intervention.

AIM: To describe the development of a shared decision making intervention for planning end-of-life care for patients with kidney failure, their relatives and health professionals in kidney services. BACKGROUND: End-of-life care conversations within standard disease management consultations are challenging for patients with kidney failure, their relatives and health professionals. End-of-life care planning is about making difficult decisions in advance, which is why health professionals need shared decision making skills to be able to initiate end-of-life conversations. Health professionals report needing more skills to raise the issue of end-of-life care options within consultations and patients want to be able to discuss issues important to them about future care plans. METHODS: The development design was guided by the UK Medical Research Council's framework and a user-centred approach was applied. Four workshops were conducted with end users. The Template for Intervention Description and Replication for Population Health and Policy interventions was used to shape which questions needed to be answered through the workshops and to present the intervention. The International Patient Decision Aid Standards (IPDAS) criteria set the standards to be achieved. RESULTS: Areas considered significant to a shared decision making intervention were training of health professionals, conversations about end-of-life care, planning and evaluation of the decisions, reporting decisions in health records and repetition of consultation. The development process went through 14 iterations. CONCLUSION: An intervention named DESIRE was developed that comprises: (1) a training programme for health professionals; (2) shared decision making conversations; and (3) a patient decision aid. The intervention met 30 out of 33 IPDAS criteria. IMPLICATIONS FOR PRACTICE: DESIRE is intended to support shared decision making about planning end-of-life care among patients with kidney failure, their relatives and health professionals. The study provides important tools for the stakeholders engaged that can be used within different models of care. IMPACT: What problem did the study address? International guidelines recommend health professionals involve patients with kidney failure in making decisions about end-of-life care, but there is variation in how this is implemented within and across kidney services. Furthermore, patients, relatives and health professionals find it challenging to initiate conversations about end-of-life care. What were the main findings? The study resulted in the development of a complex intervention, called DESIRE, about shared decision making and planning end-of-life care for patients with kidney failure, their relatives and health professionals in kidney services, including a training programme for health professionals, shared decision making conversations and a patient decision aid. Where and on whom will the research have an impact? The research contributes a shared decision making intervention to patients in the later stage of kidney failure, their relatives and health professionals. We believe that the DESIRE intervention could be introduced during consultations with health professionals at an earlier stage of the patient's illness trajectory, as well as being applied to other chronic diseases. REPORTING METHOD: This intervention development research is reported according to the GUIDance for the rEporting of intervention Development (GUIDED) checklist and the DEVELOPTOOLS Reporting Checklist. PATIENT OR PUBLIC CONTRIBUTION: Patients, relatives and health professionals have been involved throughout the research process as part of the research team and advisory board. For this study, the advisory board has particularly contributed to the development process of the DESIRE intervention by actively participating in the four workshops, in the iterations between the workshops and in the preparation of the manuscript.

Does conservative kidney management offer a quantity or quality of life benefit compared to dialysis? A systematic review.

BACKGROUND: Patients with stage 5 chronic kidney disease (CKD5) collaborate with their clinicians when choosing their future treatment modality. Most elderly patients with CKD5 may only have two treatment options: dialysis or conservative kidney management (CKM). The objective of this systematic review was to investigate whether CKM offers a quantity or quality of life benefit compared to dialysis for some patients with CKD5. METHODS: The databases MEDLINE, EMBASE, the Cochrane Library, and CINAHL were systematically searched for studies comparing patients with CKD5 who had chosen or were treated with either CKM or dialysis. The primary outcomes were mortality and quality of life (QoL). Hospitalization, symptom burden, and place of death were secondary outcomes. For studies reporting hazard ratios, pooled values were calculated, and forest plots conducted. RESULTS: Twenty-five primary studies, all observational, were identified. All studies reported an increased mortality in patients treated with CKM (pooled hazard ratio 0.47, 95 % confidence interval 0.34-0.65). For patients aged ≥ 80 years and for elderly individuals with comorbidities, results were ambiguous. In most studies, CKM seemed advantageous for QoL and secondary outcomes. Findings were limited by the heterogeneity of studies and biased outcomes favouring dialysis. CONCLUSIONS: In general, patients with CKD5 who have chosen or are on CKM live for a shorter time than patients who have chosen or are on dialysis. In patients aged ≥ 80 years old, and in elderly individuals with comorbidities, the survival benefits of dialysis seem to be lost. Regarding QoL, symptom burden, hospitalization, and place of death, CKM may have advantages. Higher quality studies are needed to guide patients and clinicians in the decision-making process.

Angiotensin blockade and progressive loss of kidney function in hemodialysis patients: a randomized controlled trial.

BACKGROUND: Glomerular filtration rate (GFR) declines during long-term dialysis treatment. In peritoneal dialysis, blockade of the renin-angiotensin-aldosterone system reduces GFR decline. Observational studies suggest that similar treatment may preserve kidney function in hemodialysis (HD). STUDY DESIGN: A multicenter, randomized, placebo-controlled, double-blinded trial, with 1-year follow-up. SETTING & PARTICIPANTS: Adult HD patients with urine output >300mL/24h, HD vintage less than 1 year, and cardiac ejection fraction >30%. Patients were included from 6 HD centers. INTERVENTION: Patients were randomly assigned to placebo or the angiotensin II receptor blocker irbesartan, 300mg daily. Target systolic blood pressure (BP) was 140mm Hg. OUTCOMES & MEASUREMENTS: Primary outcomes were change in GFR measured as the mean of creatinine and urea renal clearance together with urine volume. Secondary outcomes were change in albuminuria, renin-angiotensin II-aldosterone hormone plasma levels, and time to anuria. RESULTS: Of 82 patients randomly assigned (41 patients in each group), 56 completed 1 year of treatment. The placebo and irbesartan groups were comparable at baseline in terms of sex balance (26 vs 30 men), mean age (62 vs 61 years), median HD vintage (137 vs 148 days), mean HD time (10 vs 11h/wk), median urine volume (1.19 vs 1.26L/d), and mean GFR (4.8 vs 5.7mL/min/1.73m(2)). The target BP level was reached in both groups and BP did not differ significantly between groups over time. Adverse-event rates were similar. GFR declined by a mean of 1.7 (95% CI, 1.2-2.3) and 1.8 (95% CI, 1.1-2.4) mL/min/1.73m(2) per year in the placebo and irbesartan groups, respectively. Mean difference (baseline values minus value at 12 months) between groups was -0.0 (95% CI, -0.8 to 0.8). In each group, 4 patients became anuric. LIMITATIONS: GFR decline rates were lower than expected, reducing the power. CONCLUSIONS: At equal BP levels, we found that irbesartan treatment did not affect the decline in GFR or urine volume significantly during 1 year of treatment in HD patients. Irbesartan treatment was used safely in the studied population.

Patient involvement interventions for patients with kidney failure making end-of-life care decisions: a scoping review.

OBJECTIVE: The objective of this review was to investigate and map empirical evidence of patient involvement interventions to support patients with kidney failure making end-of-life care decisions in kidney services. INTRODUCTION: Clinical guidance integrating end-of-life care within kidney failure management pathways varies. Advance care planning interventions aimed at involving patients with kidney failure in their end-of-life care planning are established in some countries. However, there is limited evidence of the other types of patient involvement interventions integrated within services to support patients with kidney failure in making decisions about their end-of-life care. INCLUSION CRITERIA: This scoping review included studies exploring patient involvement interventions evaluated for patients with kidney failure considering end-of-life care, their relatives, and/or health professionals in kidney services. Studies of children under the age of 18 years were excluded. METHODS: The review was informed by JBI methodology and the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Review guidelines. MEDLINE, Scopus, Embase, and CINAHL were searched for full-text studies in English, Danish, German, Norwegian, or Swedish. Two independent reviewers assessed the literature against the inclusion criteria. A relational analysis framework was used to synthesize the data extracted from the included studies, and to investigate and map different patient involvement interventions. RESULTS: The search identified 1628 articles, of which 33 articles met the inclusion criteria. A total of 23 interventions were described. Interventions targeted patients (n=3); health professionals (n=8); patients and health professionals (n=5); and patients, relatives, and health professionals (n=7). Intervention components included patient resources (eg, information, patient decision aids), consultation resources (eg, advance care planning, shared decision-making), and practitioner resources (eg, communication training). Patient involvement interventions were delivered within hospital-based kidney services. CONCLUSIONS: The review identified several ways to support patients with kidney failure to be involved in end-of-life care decisions. Future interventions may benefit from adopting a complex intervention framework to engage multiple stakeholders in the research and design of an intervention for shared decision-making between patients with kidney failure, their relatives, and health professionals about integrating end-of-life care options into their kidney disease management pathway.

Shared decision-making and planning end-of-life care for patients with end-stage kidney disease: a protocol for developing and testing a complex intervention.

BACKGROUND: Internationally, it has been stressed that advance care planning integrated within kidney services can lead to more patients being involved in decisions for end-of-life care. In Denmark, there is no systematic approach to advance care planning and end-of-life care interventions within kidney services. A shared decision-making intervention for planning end-of-life care may support more effective treatment management between patients with end-stage kidney disease, their relatives and the health professionals. The purpose of this research is to find evidence to design a shared decision-making intervention and test its acceptability to patients with end-stage kidney disease, their relatives, and health professionals in Danish kidney services. METHODS: This research project will be conducted from November 2020 to November 2023 and is structured according to the UK Medical Research Council framework for complex intervention design and evaluation research. The development phase research includes mixed method surveys. First, a systematic literature review synthesising primary empirical evidence of patient-involvement interventions for patients with end-stage kidney disease making end-of-life care decisions will be conducted. Second, interview methods will be carried out with patients with end-stage kidney disease, relatives, and health professionals to identify experiences of involvement in decision-making and decisional needs when planning end-of-life care. Findings will inform the co-design of the shared decision-making intervention using an iterative process with our multiple-stakeholder steering committee. A pilot test across five kidney units assessing if the shared decision-making intervention is acceptable and feasible to patients, relatives, and health professionals providing services to support delivery of care in kidney services. DISCUSSION: This research will provide evidence informing the content and design of a shared decision-making intervention supporting patient-professional planning of end-of-life care for patients with end-stage kidney disease, and assessing its acceptability and feasibility when integrated within Danish kidney units. This research is the first step to innovating the involvement of patients in end-of-life care planning with kidney professionals.

Mapping the empirical evidence on patient involvement interventions in patients with end-stage kidney disease making end-of-life care decisions: a scoping review protocol.

OBJECTIVE: The objective of this scoping review is to investigate and map existing empirical evidence on patient involvement interventions helping patients with end-stage kidney disease to make end-of-life care decisions about kidney services. INTRODUCTION: Patients with end-stage kidney disease have a high disease burden and mortality rate. Despite this, kidney services differ in how they offer and integrate end-of-life care, if it is offered at all. Some countries have established advance care planning protocols to encourage patient involvement when offering end-of-life care options as part of end-stage kidney disease care. However, there is a limited understanding of the components of patient involvement interventions designed to support patients with end-stage kidney disease making decisions about end-of-life care. INCLUSION CRITERIA: The review will consider studies on patient involvement interventions concerning end-of-life care decisions for patients with end-stage kidney disease. A broad definition of patient involvement interventions will be used. Studies on interventions that do not involve patients or relatives will be excluded. The review will focus on interventions applied to kidney health care and other services, such as community-based health care. METHODS: MEDLINE, Embase, Scopus, and CINAHL will be searched. The literature will be screened for inclusion by two independent reviewers. Data synthesis will be conducted through relational analysis investigating patient involvement interventions and relevant information in line with the review objective and questions. Data will be extracted and listed in the data extraction instruments, accompanied by a narrative summary describing how the results relate to the review objective.

Palliative care needs experienced by Danish patients with end-stage kidney disease.

BACKGROUND: Patients with end-stage kidney disease (ESKD) may have palliative care needs. A tool validated in a Danish context to identify such needs is lacking. The Integrated Palliative Outcome Scale-Renal (IPOS-Renal) aims to identify patients' palliative care needs. The current study is the first phase of a research project translating and validating the IPOS-Renal into Danish. OBJECTIVES: To investigate palliative care needs among Danish patients with ESKD. DESIGN: A literature review was conducted using meta-ethnography inspired by Noblit and Hare. A focus group with health care professionals (HCPs) and semi-structured individual patient interviews were conducted and analysed using Malterud's principles of systematic text condensation. RESULTS: A synthesis of 15 studies, a focus group with 13 HCPs, and interviews with nine patients were conducted. We found that patients with ESKD experienced several symptoms related to physical, social, mental and existential and practical needs. The most prominent findings were fatigue, reduced physical functioning, dizziness, impaired memory, dependency on relatives or HCPs, social isolation and loss of identity. CONCLUSION: The palliative care needs identified in the Danish patient population are substantiated by the IPOS-Renal questionnaire. However, some Danish patients also appear to struggle with dizziness and impaired memory. These symptoms do not appear specifically in the IPOS-Renal questionnaire but may have to be included in a Danish version.

[Palliative care is for everyone, even for patients with life-threatening medical organ failure].

Healthcare authorities have emphasised the need to develop palliative care for everybody suffering from life-threatening diseases, including people suffering from medical organ failure. In 2011, the Danish Health Authority requested that all medical associations developed guidelines for palliative care. Until now, this has been fulfilled by only four associations. The aim of this review is to summarise the status of the palliative care needs and palliative care across diagnosis for patients suffering from life-threatening medical organ failure and to draw attention to the lack of care and the importance of guidelines.

Renal haemodynamics are not related to genotypes in offspring of parents with essential hypertension.

UNLABELLED: INTRODUCTION. The pathogenesis of essential hypertension (EH) has a major genetic component and is associated with renal abnormalities. Normotensive offspring of hypertensive parents are likely to develop EH and are a suitable population for identifying possible relations between genetic and renal abnormalities. METHODS: We investigated if renin-angiotensinaldosterone system associated genotypes (angiotensinogen [M235T] and ACE [I/D]) are related to blood pressure (BP), renal haemodynamics and sodium excretion in sex and age-matched (1835 years) healthy Caucasian offspring of either two parents with EH (n=101, EH-offspring) or two normotensive parents (n=50, controls). The alpha-adducin polymorphism (G460W) was also investigated. RESULTS: Compared to controls, BP, heart rate, renal vascular resistance (RVR) and urinary sodium excretion were, respectively, 5%, 7%, 15% and 20% higher in EHoffspring. In controls, the TT-genotype of the M235T angiotensinogen polymorphism was associated with higher BP and higher plasma angiotensinogen. By contrast, in EHoffspring the TT-genotype was associated with lower BP and unchanged plasma angiotensinogen. Plasma angiotensinogen correlated positively with BP in EH-offspring, with a similar tendency (p=0.08) in controls. The distributions of the three candidate polymorphisms were similar in EH-offspring and controls. There were no associations between any of the polymorphisms and any of the renal parameters measured. CONCLUSION: The markedly greater RVR, proportionally larger than the greater BP, supports a role for RVR in the pathogenesis of EH. The lack of association between the candidate polymorphisms and the investigated parameters, even in this homogenous and for hypertension strongly predisposed group, suggests that the polymorphisms investigated do not play important roles in the pathogenesis of hypertension.

[No evidence for renal protective effect of loop diuretics for patients having oliguria]. / Ingen evidens for nyreprotektiv effekt af loopdiuretika til oliguriske patienter.

In many intensive care units, loop diuretics are used more or less routinely to achieve a urinary output above 1 ml/kg/h in critically ill patients. We do not in the literature find any basis of this strategy. In contrast, this practice may cause a risk of circulatory instability in the critically ill patient due to large diuresis and volume depletion. There is no evidence so far that the use of loop diuretics has a renal protective effect or any other beneficial impact on the renal function. The use of loop diuretics in oliguric critically ill patients may be harmful. Consequently an individual assessment is required.

Treatment of young subjects at high familial risk of future hypertension with an angiotensin-receptor blocker.

UNLABELLED: Offspring of hypertensive parents are at high risk of future hypertension and subsequent cardiovascular diseases. We investigated whether early treatment with an angiotensin-receptor blocker in young normotensive offspring of hypertensive parents persistently lowered blood pressure after treatment withdrawal, a possibility supported by animal studies. The study is an investigator-initiated, double-blind study of 110 healthy normotensive subjects aged 18 to 36 years where both parents have essential hypertension randomly assigned to 1 of 2 treatment groups: candesartan (Atacand, Astra Zeneca), 16 mg o.d. or placebo. The intervention period was 12 months, with 24 months of follow-up. PRIMARY OUTCOME was mean 24-hour ambulatory blood pressure recordings (mean AMBP) after 12 and 24 months follow-up and was based on intention to treat (n=110). SECONDARY OUTCOMES were changes during treatment in mean AMBP, left ventricular mass, renal hemodynamics, and adverse events during intervention and were based on those completing the intervention period (n=105). PRIMARY OUTCOME: At 12 and 24 months follow-up, mean AMBP was not different to placebo. SECONDARY OUTCOMES: After 12 months of intervention, mean AMBP was reduced: -3.9/-3.4 mm Hg for candesartan versus 0.3/0.6 mm Hg for placebo, P<0.0001. Renal vascular resistance and left ventricular mass were also reduced (P=0.0007, P=0.019, respectively). There were no significant differences in adverse advents between the 2 groups. In conclusion, temporary treatment of subjects at high familial risk of future hypertension with an angiotensin receptor blocker is feasible, but the treatment had no persistent effect on blood pressure when treatment was withdrawn.