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To identify decision characteristics for which SDM authors deem SDM appropriate or not, and what arguments are used.We applied two search strategies: we included SDM models from an earlier review (strategy 1) and conducted a new search in eight databases to include papers other than describing an SDM model, such as original research, opinion papers and reviews (strategy 2).From the 92 included papers, we identified 18 decision characteristics for which authors deemed SDM appropriate, including preference-sensitive, equipoise and decisions where patient commitment is needed in implementing the decision. SDM authors indicated limits to SDM, especially when there are immediate life-saving measures needed. We identified four decision characteristics on which authors of different papers disagreed on whether or not SDM is appropriate.The findings of this review show the broad range of decision characteristics for which authors deem SDM appropriate, the ambiguity of some, and potential limits of SDM.The findings can stimulate clinicians to (re)consider pursuing SDM in situations in which they did not before. Additionally, it can inform SDM campaigns and educational programs as it shows for which decision situations SDM might be more or less challenging to practice.

Background Unhelpful illness perceptions can be changed by means of interventions and can lead to improved outcomes. However, little is known about illness perceptions in patients with chronic kidney disease (CKD) prior to kidney failure, and no tools exist in nephrology care to identify and support patients with unhelpful illness perceptions. Therefore, this study aims to: (1) identify meaningful and modifiable illness perceptions in patients with CKD prior to kidney failure; and (2) explore needs and requirements for identifying and supporting patients with unhelpful illness perceptions in nephrology care from patients’ and healthcare professionals’ perspectives. Methods Individual semi-structured interviews were conducted with purposive heterogeneous samples of Dutch patients with CKD (n = 17) and professionals (n = 10). Transcripts were analysed using a hybrid inductive and deductive approach: identified themes from the thematic analysis were hereafter organized according to Common-Sense Model of Self-Regulation principles. Results Illness perceptions considered most meaningful are related to the seriousness (illness identity, consequences, emotional response and illness concern) and manageability (illness coherence, personal control and treatment control) of CKD. Over time, patients developed more unhelpful seriousness-related illness perceptions and more helpful manageability-related illness perceptions, caused by: CKD diagnosis, disease progression, healthcare support and approaching kidney replacement therapy. Implementing tools to identify and discuss patients’ illness perceptions was considered important, after which support for patients with unhelpful illness perceptions should be offered. Special attention should be paid towards structurally embedding psychosocial educational support for patients and caregivers to deal with CKD-related symptoms, consequences, emotions and concerns about the future. Conclusions Several meaningful and modifiable illness perceptions do not change for the better by means of nephrology care. This underlines the need to identify and openly discuss illness perceptions and to support patients with unhelpful illness perceptions. Future studies should investigate whether implementing illness perception-based tools will indeed improve outcomes in CKD.

Introduction After decades of increasing dialysis incidence, we observed a decreasing trend in the Netherlands in the last decade. We compared this trend with trends in other European countries. Materials and Methods Aggregated data for calendar years 2001–2019 from the Dutch registries of kidney replacement therapy patients and the European Renal Association Registry were used. Dialysis incidence in the Netherlands was compared with that in 11 other European countries/regions using three age groups: 20–64, 65–74, and ≥75 years, taking into account pre-emptive kidney transplantation (PKT) incidence. Time trends were assessed as annual percentage change (APC) with 95% confidence intervals (CI) using joinpoint regression analysis. Results Between 2001 and 2019 the Dutch dialysis incidence decreased slightly among patients aged 20–64 years (APC −0.9, 95% CI −1.4; −0.5). For patients 65–74 and ≥75 years old, a peak was seen in 2004 and 2009, respectively. Afterwards, the decrease was most marked in patients aged ≥75 years: APC −3.2 (−4.1; −2.3) versus APC −1.8 (−2.2; −1.3) for patients 65–74 years old. PKT incidence increased significantly during the study period but remained limited compared to the observed decrease in dialysis incidence, especially among older patients. Large differences in dialysis incidence were observed among European countries/regions. A decreasing dialysis incidence among older patients was also seen in Austria, Denmark, England/Wales, Finland, Scotland, and Sweden. Conclusions The Dutch dialysis incidence decreased most profoundly among older patients. This was also observed in several other European countries/regions. Although PKT incidence increased, it can only explain a minor part of the decrease in dialysis incidence.

Purpose Shared decision making calls for clinician communication strategies that aim to foster choice awareness and to present treatment options neutrally, such as by not showing a preference. Evidence for the effectiveness of these communication strategies to enhance patient involvement in treatment decision making is lacking. We tested the effects of 2 strategies in an online randomized video-vignettes experiment. Methods We developed disease-specific video vignettes for rheumatic disease, cancer, and kidney disease showcasing a physician presenting 2 treatment options. We tested the strategies in a 2 (choice awareness communication present/absent) by 2 (physician preference communication present/absent) randomized between-subjects design. We asked patients and disease-naïve participants to view 1 video vignette while imagining being the patient and to report perceived room for involvement (primary outcome), understanding of treatment information, treatment preference, satisfaction with the consultation, and trust in the physician (secondary outcomes). Differences across experimental conditions were assessed using 2-way analyses of variance. Results A total of 324 patients and 360 disease-naïve respondents participated (mean age, 52 ± 14.7 y, 54% female, 56% lower educated, mean health literacy, 12 ± 2.1 on a 3–15 scale). The results showed that choice awareness communication had a positive (Mpresent = 5.2 v. Mabsent = 5.0, P = 0.042, η2partial = 0.006) and physician preference communication had no (Mpresent = 5.0 v. Mabsent = 5.1, P = 0.144, η2partial = 0.003) significant effect on perceived room for involvement in decision making. Physician preference communication steered patients toward preferring that treatment option (Mpresent = 4.7 v. Mabsent = 5.3, P = 0.006, η2partial = 0.011). The strategies had no significant effect on understanding, satisfaction, or trust. Conclusions This is the first experimental evidence for a small effect of fostering choice awareness and no effect of physician preference on perceived room to participate in decision making. Physician preference steered patients toward preferring that option.

Background The prevalence of end-stage renal disease (ESRD) is increasing worldwide, with the majority of new ESRD cases diagnosed in patients >60 years of age. These older patients are at increased risk for impaired cognitive functioning, potentially through cerebral small vessel disease (SVD). Novel markers of vascular integrity may be of clinical value for identifying patients at high risk for cognitive impairment. Methods We aimed to associate the levels of angiopoietin-2 (Ang-2), asymmetric dimethylarginine and a selection of eight circulating angiogenic microRNAs (miRNAs) with SVD and cognitive impairment in older patients reaching ESRD that did not yet initiate renal replacement therapy (n = 129; mean age 75.3 years, mean eGFR 16.4 mL/min). We assessed brain magnetic resonance imaging changes of SVD (white matter hyperintensity volume, microbleeds and the presence of lacunes) and measures of cognition in domains of memory, psychomotor speed and executive function in a neuropsychological test battery. Results Older patients reaching ESRD showed an unfavourable angiogenic profile, as indicated by aberrant levels of Ang-2 and five angiogenic miRNAs (miR-27a, miR-126, miR-132, miR-223 and miR-326), compared with healthy persons and patients with diabetic nephropathy. Moreover, Ang-2 was associated with SVD and with the domains of psychomotor speed and executive function, while miR-223 and miR-29a were associated with memory function. Conclusions Taken together, these novel angiogenic markers might serve to identify older patients with ESRD at risk of cognitive decline, as well as provide insights into the underlying (vascular) pathophysiology.

Background Health related quality of life (HRQL) is an important outcome measure in geriatric oncology. Surgery is the main treatment for colorectal cancer (CRC) but has been associated with a loss of HRQL in older patients. This study aimed to identify determinants for a decreased HRQL at three months after CRC diagnosis. Method This multi-centre observational cohort study ( NCT04443816 ) included 273 patients aged ≥70 years diagnosed with non-metastatic CRC. A multi-domain frailty screening was performed in each patient. A decreased HRQL was defined as a mean difference ≥ 10 on the EORTC QLQ-C30 questionnaire between baseline and three months after CRC diagnosis. Determinants of a decreased HRQL were analysed using multivariable logistic regression. Results A decrease in HRQL occurred in 63 patients (23.1%). Non-surgical patients had the highest risk of decreased HRQL three months after diagnosis (adjusted odds ratio (OR) 6.4 (95% confidence interval (CI) 2.0–19.8)). The Charlson Comorbidity Index (CCI) (aOR 2.3 (95% (CI) 1.2–4.2)), the American Association of Anesthesiologists class (aOR 2.6 (95%CI 1.4–4.9)), impaired daily functioning (aOR 2.7 (95%CI 1.3–5.6)) and dependent living (aOR 1.9 (95%CI 1.1–4.5)) were associated with a decreased HRQL, mainly caused by non-surgical patients. In surgical patients, a major postoperative complication was a strong determinant of decreased HRQL and was associated with preoperative comorbidity and cognitive impairment (aOR 4.0 (95%CI 1.9–8.8)). Conclusion Frailty characteristics are highly prevalent in older patients at time of CRC diagnosis but not strongly associated with a decreased HRQL after three months. Non-surgical patients and patients with major postoperative complications had the highest risk of decreased HRQL. Registered at clinicaltrials.gov trial number: NCT04443816

BackgroundThe use of patient-reported outcome measures (PROMs) is becoming increasingly important in healthcare. However, incorporation of PROMs into routine nephrological care is challenging. This study describes the first experience with PROMs in Dutch routine dialysis care.MethodsA pilot study was conducted in dialysis patients in 16 centres. Patients were invited to complete PROMs at baseline and 3 and 6 months. PROMs consisted of the 12-item short-form and Dialysis Symptom Index to assess health-related quality of life (HRQoL) and symptom burden. Response rates, HRQoL and symptom burden scores were analysed. Qualitative research methods were used to gain insight into patients’ views on using PROMs in clinical practice.ResultsIn total, 512 patients (36%) completed 908 PROMs (24%) across three time points. Response rates varied from 6 to 70% among centres. Mean scores for physical and mental HRQoL were 35.6 [standard deviation (SD) 10.2] and 47.7 (SD 10.6), respectively. Patients experienced on average 10.8 (SD 6.1) symptoms with a symptom burden score of 30.7 (SD 22.0). Only 1–3% of the variation in PROM scores can be explained by differences between centres. Patients perceived discussing their HRQoL and symptom scores as insightful and valuable. Individual feedback on results was considered crucial.ConclusionsThe first results show low average response rates with high variability among centres. Dialysis patients experienced a high symptom burden and poor HRQoL. Using PROMs at the individual patient level is suitable and may improve patient–professional communication and shared decision making. Further research is needed to investigate how the collection and the use of PROMs can be successfully integrated into routine care to improve healthcare quality and outcomes.

ObjectivesWe aimed to systematically map the extent, range and nature of research activity on value-based healthcare (VBHC), and to identify research gaps.DesignA scoping review with an additional cited reference search was conducted, guided by the Joanna Briggs Institute methodology.Data sourcesThe search was undertaken in PubMed, Embase and Web of Science.Eligibility criteriaEligible articles mentioned VBHC or value with reference to the work of Porter or provided a definition of VBHC or value.Data extraction and synthesisData were independently extracted using a data extraction form. Two independent reviewers double extracted data from 10% of the articles. Data of the remaining articles (90%) were extracted by one reviewer and checked by a second. The strategic agenda of Porter and Lee was used to categorise the included articles.ResultsThe searches yielded a total of 27,931 articles, of which 1,242 were analysed. Most articles were published in North America. Most articles described an application of VBHC by measuring outcomes and costs (agenda item 2). The other agenda items were far less frequently described or implemented. Most of these articles were conceptual, meaning that nothing was actually changed or implemented.ConclusionThe number of publications increased steadily after the introduction of VBHC in 2006. Almost one-fifth of the articles could not be categorised in one of the items of the strategic agenda, which may lead to the conclusion that the current strategic agenda could be extended. In addition, a practical roadmap or guideline to implement VBHC is still lacking. Future research could fill this gap by specifically studying the effectiveness of VBHC in day-to-day clinical practice.

Background During the COVID-19 pandemic, several home monitoring programs have described the success of reducing hospital admissions, but only a few studies have investigated the experiences of patients and health care professionals. Objective The objective of our study was to determine patients’ and health care professionals’ experiences and satisfaction with employing the COVID-box. Methods In this single-center, retrospective, observational study, patients and health care professionals were asked to anonymously fill out multiple-choice questionnaires with questions on a 5-point or 10-point Likert scale. The themes addressed by patients were the sense of reassurance and safety, experiences with teleconsultations, their appreciation for staying at home, and the instructions for using the COVID-box. The themes addressed by health care professionals who treated patients with the COVID-box were the characteristics of the COVID-box, the technical support service and general satisfaction, and their expectations and support for this telemonitoring concept. Scores were interpreted as insufficient (≤2 or ≤5, respectively), sufficient (3 or 6-7, respectively), or good (≥4 or ≥8, respectively) on a 5-point or 10-point Likert scale. Results A total of 117 patients and 25 health care professionals filled out the questionnaires. The median score was 4 (IQR 4-5) for the sense of safety, the appreciation for staying at home, and experiences with teleconsultations, with good scores from 76.5% (88/115), 86% (56/65), and 83.6% (92/110) of the patients, respectively. Further, 74.4% (87/117) of the patients scored the home monitoring program with a score of ≥8. Health care professionals scored the COVID-box with a minimum median score of 7 (IQR 7-10) on a 10-point scale for all domains (ie, the characteristics of the COVID-box and the technical support service and general satisfaction). For the sense of safety, user-friendliness, and additional value of the COVID-box, the median scores were 8 (IQR 8-10), 8 (IQR 7-9), and 10 (IQR 8-10), respectively, with good scores from 86% (19/22), 75% (15/20), and 96% (24/25) of the health care professionals, respectively. All health care professionals (25/25, 100%) gave a score of ≥8 for supporting this home monitoring concept, with a median score of 10 (IQR 10-10). Conclusions The positive experiences and satisfaction of involved users are key factors for the successful implementation of a novel eHealth solution. In our study, patients, as well as health care professionals, were highly satisfied with the use of the home monitoring program—the COVID-box project. Remote home monitoring may be an effective approach in cases of increased demand for hospital care and high pressure on health care systems.

At a certain point, patients with kidney failure will need to decide whether or not to start kidney replacement therapy, i.e. dialysis or kidney transplantation. An increasing number of patients choose to forgo dialysis or transplantation and opt for conservative care. In part, this trend is explained by the ageing population of patients with kidney failure and a more limited survival benefit for dialysis in older patients. Conservative care is a holistic, patient-orientated treatment, aimed at quality of life, advance care planning, reducing symptom burden, and slowing the deterioration of kidney function. As such, conservative care is an active treatment and not merely forgoing kidney replacement therapy. This article will summarize the various aspects of the decision- and treatment phase of conservative care for patients with kidney failure for healthcare providers, both in hospital- and primary care.

BACKGROUND AND AIMS Dialysis might not benefit all older patients with kidney failure, particularly those with multi-morbid conditions and frailty. Awareness of the presence of geriatric impairments has the potential to improve outcomes by tailoring treatment plans and decisions for individual patients. Geriatric assessment has been recommended in guidelines to support shared decision making (SDM) in older patients with kidney failure. We aimed to describe the perspectives of patients and healthcare professionals on the Nephro-Geriatric Assessment (NGA) as a SDM tool for treatment choice in older patients approaching kidney failure (eGFR) METHOD Patients (N = 18) with kidney failure, caregivers (N = 4) and professionals (N = 25) were purposively sampled from three university medical centre initiatives and seven regional hospitals from different provinces in the Netherlands. Six semi-structured focus groups were held to discuss participants’ experiences with and perspectives on NGA as an aid to SDM in their choices to start or forego dialysis. Transcripts were analysed inductively using thematic analysis. RESULTS Professionals reported that NGA, performed prior to SDM about kidney replacement therapy (KRT), creates awareness of patients’ possibilities but also of their limitations. Somatic frailty is unearthed alongside in-depth knowledge about patients’ social system and psychological wellbeing––information they consider vital for good quality SDM relative to KRT. Professionals reported NGA as being a valuable tool to initiate discussions on treatment decisions and patient goals, and improve awareness to (re)consider different treatment options. Although patients and caregivers had positive attitudes towards NGA, they were mostly unaware of the purpose and role that NGA could play in SDM about KRT. Several interconnecting themes, which could facilitate or hinder SDM in kidney failure were identified and grouped under three main themes: (1) patient psycho-social situation: social support system and who influences decisions (e.g. choosing to dialyze due to family pressure), trusting patient–professional relationships, patient emotions (e.g. anxiety about being a burden to family and society), quality of life and life goals; (2) on modality choice: medical history and frailty, patient character and attitudes (e.g. an optimistic or pessimistic view of life), health-related information and education, continual assessment of situation; (3) organization of health care: multidisciplinary approach, consultation with geriatrician, early referral to kidney failure care and consultation time. CONCLUSION Professionals confirmed the benefits of NGA as a tool to identify geriatric impairments in older patients approaching kidney failure and how integration of its outcomes can facilitate a more holistic approach to inform choices about KRT based on patient values, expectations and goals. Recognition of supporting factors and resolution of impeding factors to SDM about KRT can be beneficial for good SDM. Our study underscores the importance of clear patient–professional communication. Conducting NGA provides anchors to include information on geriatric impairments, which is potentially valuable for the prevention of decisional regret.

BACKGROUND AND AIMS The growing population of older patients with chronic kidney disease (CKD) often faces unidentified cognitive impairments and high prevalence of depressive symptoms. Apathy is a clinical syndrome associated with both depression and cognitive decline in community-dwelling older people. Furthermore, apathy has been more often linked to vascular impairments, which are also highly prevalent in the CKD population. However, so far, prevalence and consequences of apathy in older CKD patients have not been studied. We aimed (1) to investigate the prevalence of apathy symptoms in an older population with CKD stage G4/G5 (eGFR METHOD Data was used from the prospective multicenter COPE (Cognitive Decline in Older Patients with ESKD) cohort, which included CKD patients aged ≥65 years with an eGFR of ≤20 mL/min/1.73 m2. Symptoms of apathy were assessed with the 3-item subscale of the 15-item Geriatric Depression (GDS-3A score ≥2) and depressive symptoms with the remaining items of this scale (GDS-12D ≥2). Frailty, (Fried Frailty Index ≥3), functional dependence (GARS score), handgrip strength and walking speed were measured. Cognitive functioning was assessed by means of global cognition (Mini Mental State Examination), visuoconstruction (Clock drawing), memory (15-Word Verbal Learning Test and Visual Association Test), executive function (Trail Making Test-B) and psychomotor speed (Letter Digit Substitution Test, Trail Making Test -A). Cross-sectional correlations between groups were tested with t-tests, Mann–Whitney and Chi-squared tests. Hazard ratio for mortality was analysed with Cox regression adjusting for age, gender and primary vascular kidney disease. RESULTS In total n = 180 patients, 67% male, were included with a median age of 75.5 years (IQR 71.0–80.9) and mean eGFR of 16.5 (SD 4.6). Symptoms of apathy and isolated apathy (i.e. with no symptoms of depression) were seen in respectively 36% (n = 64) and 17% (n = 30) of the study population. Presence of apathy symptoms at baseline was associated with primary vascular kidney disease (P = 0.031), depression (P CONCLUSION Symptoms of apathy occurred in one third of this cohort of older advanced CKD patients. Although apathy was associated with presence of depressive symptoms, half of the cases were not. Apathy is associated with multiple functional and cognitive measures and two-fold increased mortality. Future investigations should focus on cause of apathy and its value in predicting cognitive decline in older CKD patients. Because of the relation of apathy with future outcomes, assessment of apathy might be of value in shared decision making on renal replacement therapy in older CKD patients.

OBJECTIVE To determine the value of preoperative frailty screening in predicting postoperative severe complications and 1-year mortality in patients undergoing radical cystectomy (RC). PATIENTS AND METHODS Prospective cohort single-centre study in patients undergoing RC from September 2016 to December 2017. Preoperative frailty screening was implemented as standard care and was used to guide shared decision-making during multidisciplinary team meetings. Frailty screening consisted of validated tools to assess physical, mental and social frailty. Patients were considered frail when having two or more frailty characteristics. The primary endpoint was the composite of a severe complication (Clavien-Dindo Grade III-V) within 30 days and 1-year all-cause mortality. The secondary endpoints included any complication (Clavien-Dindo II-V), length of stay, readmission within 30 days, and all-cause mortality. Logistic regression analysis and the concordance statistic (c-statistic) were used to describe the association and predictive value of preoperative frailty screening. RESULTS A total of 63 patients were included; 39 (61.9%) were considered frail. Preoperative frailty was associated with a seven-fold increased risk of a severe complication or death 1 year after RC [adjusted odds ratio (OR) 7.36, 95% confidence interval (CI) 1.7-31.8; 22 patients]. Compared to the American Society of Anesthesiologists (ASA) score and Charlson Comorbidity Index, frailty showed the best model performance (Nagelkerke R2 0.20) and discriminative ability(c-statistic 0.72, P

BackgroundNon-dialytic conservative care (CC) has been proposed as a treatment option for patients with kidney failure. This systematic review and meta-analysis aims at comparing survival outcomes between dialysis and CC in studies where patients made an explicit treatment choice.MethodsFive databases were systematically searched from origin through 25 February 2021 for studies comparing survival outcomes among patients choosing dialysis versus CC. Adjusted and unadjusted survival rates were extracted and meta-analysis performed where applicable. Risk of bias analysis was performed according to the Cochrane Risk Of Bias In Non-randomized Studies of Interventions.ResultsA total of 22 cohort studies were included covering 21 344 patients. Most studies were prone to selection bias and confounding. Patients opting for dialysis were generally younger and had fewer comorbid conditions, fewer functional impairments and less frailty than patients who chose CC. The unadjusted median survival from treatment decision or an estimated glomerular filtration rate ConclusionsPatients opting for dialysis have an overall lower mortality risk compared with patients opting for CC. However, a high risk of bias and heterogeneous reporting preclude definitive conclusions and results cannot be translated to an individual level.

A fixed 6 mg dexamethasone dose for 10 days is the standard treatment for all hospitalised COVID-19 patients who require supplemental oxygen. Yet, the pharmacokinetic properties of dexamethasone can lead to diminishing systemic dexamethasone exposure with increasing body mass index (BMI). The present study examines whether this translates to overweight and obesity being associated with worse clinical outcomes, defined as ICU admission or in hospital death, in COVID-19 patients treated with fixed-dose dexamethasone.We conducted a single centre retrospective cohort study in COVID-19 patients who were admitted to a non-ICU ward and were treated with dexamethasone (6 mg once daily for a maximum of ten days) between June 2020 and January 2021. Univariable and multivariable logistic regression analyses were conducted to assess the association between BMI-categories and an unfavourable clinical course (ICU admission and/or in hospital death). Analyses were adjusted for age, comorbidities, inflammatory status, and oxygen requirement at admission. For reference, similar analyses were repeated in a cohort of patients hospitalised before dexamethasone was introduced (March 2020 through May 2020).In patients treated with dexamethasone (n = 385) an unfavourable clinical course was most prevalent in patients with normal weight (BMI 25) compared to patients with overweight (BMI 25-30) and patients with obesity (BMI ≥ 30) with percentages of 33, 26 and 21% respectively. In multivariable analyses, there was no association between BMI-category and an unfavourable clinical course (respectively with aORs of 0.81 (0.43-1.53) and 0.61 (0.30-1.27) with normal weight as reference). In the reference cohort (n = 249) the opposite was observed with an unfavourable clinical course being most prevalent in patients with overweight (39% vs 28%; aOR 2.17 (0.99-4.76)). In both cohorts, CRP level at admission was higher and lymphocyte count was lower in patients with normal weight compared to patients with obesity.Overweight and obesity are not associated with an unfavourable clinical course in COVID-19 patients admitted to a non-ICU ward and treated with 6 mg dexamethasone once daily.

Importance: During the past decades, improvements in the prevention and management of myocardial infarction, stroke, and pulmonary embolism have led to a decline in cardiovascular mortality in the general population. However, it is unknown whether patients receiving dialysis have also benefited from these improvements. Objective: To assess the mortality rates for myocardial infarction, stroke, and pulmonary embolism in a large cohort of European patients receiving dialysis compared with the general population. Design, Setting, and Participants: In this cohort study, adult patients who started dialysis between 1998 and 2015 from 11 European countries providing data to the European Renal Association Registry were and followed up for 3 years. Data were analyzed from September 2020 to February 2022. Exposures: Start of dialysis. Main Outcomes and Measures: The age- and sex-standardized mortality rate ratios (SMRs) with 95% CIs were calculated by dividing the mortality rates in patients receiving dialysis by the mortality rates in the general population for 3 equal periods (1998-2003, 2004-2009, and 2010-2015). Results: In total, 220 467 patients receiving dialysis were included in the study. Their median (IQR) age was 68.2 (56.5-76.4) years, and 82 068 patients (37.2%) were female. During follow-up, 83 912 patients died, of whom 7662 (9.1%) died because of myocardial infarction, 5030 (6.0%) died because of stroke, and 435 (0.5%) died because of pulmonary embolism. Between the periods 1998 to 2003 and 2010 to 2015, the SMR of myocardial infarction decreased from 8.1 (95% CI, 7.8-8.3) to 6.8 (95% CI, 6.5-7.1), the SMR of stroke decreased from 7.3 (95% CI, 7.0-7.6) to 5.8 (95% CI, 5.5-6.2), and the SMR of pulmonary embolism decreased from 8.7 (95% CI, 7.6-10.1) to 5.5 (95% CI, 4.5-6.6). Conclusions and Relevance: In this cohort study of patients receiving dialysis, mortality rates for myocardial infarction, stroke, and pulmonary embolism decreased more over time than in the general population. publishedVersion

IntroductionWithin the value-based healthcare framework, outcome data can be used to inform patients about (treatment) options, and empower them to make shared decisions with their health care professional. To facilitate shared decision-making (SDM) supported by outcome data, a multicomponent intervention has been designed, including patient decision aids on the organisation of post-treatment surveillance (breast cancer); discharge location (stroke) and treatment modality (advanced kidney disease), and training on SDM for health care professionals. The SHared decision-making supported by OUTcome information (SHOUT) study will examine the effectiveness of the intervention and its implementation in clinical practice.Methods and analysisMultiple interrupted time series will be used to stepwise implement the intervention. Patients diagnosed with either breast cancer (N=630), stroke (N=630) or advanced kidney disease (N=473) will be included. Measurements will be performed at baseline, three (stroke), six and twelve (breast cancer and advanced kidney disease) months. Trends on outcomes will be measured over a period of 20 months. The primary outcome will be patients’ perceived level of involvement in decision-making. Secondary outcomes regarding effectiveness will include patient-reported SDM, decisional conflict, role in decision-making, knowledge, quality of life, preferred and chosen care, satisfaction with the intervention, healthcare utilisation and health outcomes. Outcomes regarding implementation will include the implementation rate and a questionnaire on the health care professionals’ perspective on the implementation process.Ethics and disseminationThe Medical research Ethics Committees United in Nieuwegein, the Netherlands, has confirmed that the Medical Research Involving Human Subjects Act does not apply to this study. Bureau Onderzoek & Innovatie of Santeon, the Netherlands, approved this study. The results will contribute to insight in and knowledge on the use of outcome data for SDM, and can stimulate sustainable implementation of SDM.Trial registration numberNL8374, NL8375 and NL8376.

Background Health-related quality of life (HRQOL) is becoming an increasingly important outcome in kidney transplantation (KT). To describe HRQOL in kidney transplant recipients (KTRs), this systematic review summarizes literature that compared HRQOL among KTRs and other relevant populations [i.e. patients receiving dialysis, patients on the waiting list (WL) for KT, patients with chronic kidney disease (CKD) not receiving renal replacement therapy (RRT), the general population (GP) and healthy controls (HCs)] and themselves before KT. Methods The literature search was conducted in PubMed, Embase, Web of Science and the Cochrane Library. Eligible studies published between January 2000 and October 2020 were included. Results Forty-four studies comprising 6929 KTRs were included in this systematic review. Despite the study heterogeneity, KTRs reported a higher HRQOL after KT compared with pre-transplantation and compared with patients receiving dialysis with or without being on the WL, especially in disease-specific domains (i.e. burden and effects of kidney disease). Additionally, KTRs had similar to marginally higher HRQOL compared with patients with CKD Stages 3–5 not receiving RRT. When compared with HCs or the GP, KTRs reported similar HRQOL in the first 1 or 2 years after KT and lower physical HRQOL and lower to comparable mental HRQOL in studies with longer post-transplant time. Conclusions The available evidence suggests that HRQOL improves after KT and can be restored to but not always maintained at pre-CKD HRQOL levels. Future studies investigating intervention targets to improve or maintain post-transplant HRQOL are needed.

Background Itching (pruritus) is common in dialysis patients, but little is known about its impact on health-related quality of life (HRQOL), sleep problems and psychological symptoms. This study investigates the impact of itching in dialysis patients by looking into the persistence of itching, the effect of itching on the course of HRQOL and the combined effect of itching with sleep problems and with psychological symptoms on HRQOL. Methods Data were obtained from the RENINE/PROMs registry and included 2978 dialysis patients who completed patient-reported outcome measures between 2018 and 2020. Itching, sleep problems and psychological symptoms were assessed with the Dialysis Symptom Index (DSI) and HRQOL with the 12-item Short Form Health Survey. Effects of itching on HRQOL and interactions with sleep problems and psychological symptoms were investigated cross-sectionally and longitudinally using linear regression and linear mixed models. Results Half of the patients experienced itching and in 70% of them, itching was persistent. Itching was associated with a lower physical and mental HRQOL {−3.35 [95% confidence interval (CI) −4.12 to −2.59) and −3.79 [95% CI −4.56 to −3.03]}. HRQOL remained stable during 2 years and trajectories did not differ between patients with or without itching. Sleep problems (70% versus 52%) and psychological symptoms (36% versus 19%) were more common in patients with itching. These symptoms had an additional negative effect on HRQOL but did not interact with itching. Conclusions The persistence of itching, its impact on HRQOL over time and the additional effect on HRQOL of sleep problems and psychological symptoms emphasize the need for recognition and effective treatment of itching to reduce symptom burden and improve HRQOL.

Background Dialysis withdrawal is a common cause of death in dialysis-dependent patients. This study aims to describe dialysis withdrawal practice in The Netherlands, focussing on time trends, risk factors and centre variation. Methods Data were retrieved from the Dutch registry of kidney replacement therapy patients. All patients who started maintenance dialysis and died in the period 2000–2019 were included. The main outcome was death after dialysis withdrawal; all other causes of death were used for comparison. Time trends were analysed as unadjusted data (proportion per year) and the year of death was included in a multivariable logistic model. Univariable and multivariable analyses were performed to identify factors associated with withdrawal. Centre variation was compared using funnel plots. Results A total of 34 692 patients started dialysis and 18 412 patients died while on dialysis. Dialysis withdrawal was an increasingly common cause of death, increasing from 18.3% in 2000–2004 to 26.8% in 2015–2019. Of all patients withdrawing, 26.1% discontinued treatment within their first year. In multivariable analysis, increasing age, female sex, haemodialysis as a treatment modality and year of death were independent factors associated with death after dialysis withdrawal. Centre variation was large (80.7 and 57.4% within 95% control limits of the funnel plots for 2000–2009 and 2010–2019, respectively), even after adjustment for confounding factors. Conclusions Treatment withdrawal has become the main cause of death among dialysis-dependent patients in The Netherlands, with large variations between centres. These findings emphasize the need for timely advance care planning and improving the shared decision-making process on choosing dialysis or conservative care.

Most COVID-19 cases can be managed in the outpatient setting, however approximately 10–15% deteriorate and require hospitalisation [1, 2]. Worldwide, including the Netherlands, the COVID-19 pandemic causes severe pressure on the national healthcare system and laboratory testing capacity [3]. Home-monitoring has been suggested as potentially beneficial to monitor (suspected) COVID-19 patients while reducing hospital admissions and viral exposure to healthcare workers [4]. We performed a retrospective single-center case-control study on the implementation of a home-monitoring programme of suspected COVID-19 patients presenting to the Emergency Department (ED) of the Leiden University Medical Center (LUMC, the Netherlands). Home-monitoring in this study, refered to the clinical pathway (the COVID-box project) in which patients were given tools and devices (blood pressure monitor, pulse oximeter, thermometer and concomitant instructions) upon discharge from the ED to monitor their vital parameters at home three times a day combined with daily teleconsultations (preferably videoconsultations) carried out by a healthcare professional, as extensively reviewed elsewhere [5].

Background Non-dialytic conservative care (CC) has been proposed as a viable alternative to maintenance dialysis for selected older patients to treat end-stage kidney disease (ESKD). This systematic review compares both treatment pathways on health-related quality of life (HRQoL) and symptoms, which are major outcomes for patients and clinicians when deciding on preferred treatment. Methods We searched PubMed, Embase, Cochrane Library, Cumulative Index to Nursing and Allied Health Literature (CINAHL) Plus and PsycINFO from inception to 1 October 2019 for studies comparing patient-reported HRQoL outcomes or symptoms between patients who chose either CC or dialysis for ESKD. Results Eleven observational cohort studies were identified comprising 1718 patients overall. There were no randomized controlled trials. Studies were susceptible to selection bias and confounding. In most studies, patients who chose CC were older and had more comorbidities and worse functional status than patients who chose dialysis. Results were broadly consistent across studies, despite considerable clinical and methodological heterogeneity. Patient-reported physical health outcomes and symptoms appeared to be worse in patients who chose CC compared with patients who chose dialysis but had not yet started, but similar compared with patients on dialysis. Mental health outcomes were similar between patients who chose CC or dialysis, including before and after dialysis start. In patients who chose dialysis, the burden of kidney disease and impact on daily life increased after dialysis start. Conclusions The available data, while heterogeneous, suggest that in selected older patients, CC has the potential to achieve similar HRQoL and symptoms compared with a dialysis pathway. High-quality prospective studies are needed to confirm these provisional findings.

ObjectiveNon-dialytic conservative care is argued to be a reasonable treatment alternative for dialysis in selected older patients with advanced chronic kidney disease. We evaluated patient-relevant outcomes including health-related quality of life in a previous study. However, the scoring algorithm we used to calculate the physical and mental component summary scores of the Short Form-36 (SF-36) turned out to differ from comparable studies on this topic. The aim of this critical appraisal was to reanalyze the SF-36 summary scores in our patient cohort (≥ 70 years) using the more widely used scoring algorithm.ResultsPatients on conservative care (n = 23) had lower physical and mental component summary scores compared to patients not yet started on dialysis (n = 39), but similar compared to patients on dialysis (n = 34). These findings were similar to our original findings and did not change the conclusions. Several scoring algorithms are used for the SF-36 summary scores. Researchers should be aware of this fact and should use the same scoring algorithm across similar studies in a specific field to increase comparability. Using the more widely used scoring algorithm, the recalculated SF-36 summary scores of our patient cohort can now be compared to other studies.

Background Bleeding risk scores have been created to identify patients with an increased bleeding risk, which could also be useful in dialysis patients. However, the predictive performances of these bleeding risk scores in dialysis patients are unknown. Therefore, the aim of this study was to validate existing bleeding risk scores in dialysis patients. Methods A cohort of 1745 incident dialysis patients was prospectively followed for 3 years during which bleeding events were registered. We evaluated the discriminative performance of the Hypertension, Abnormal kidney and liver function, Stroke, Bleeding, Labile INR, Elderly and Drugs or alcohol (HASBLED), the AnTicoagulation and Risk factors In Atrial fibrillation (ATRIA), the Hepatic or kidney disease, Ethanol abuse, Malignancy, Older age, Reduced platelet count or Reduced platelet function, Hypertension, Anaemia, Genetic factors, Excessive fall risk and Stroke (HEMORR2HAGES) and the Outcomes Registry for Better Informed Treatment (ORBIT) bleeding risk scores by calculating C-statistics with 95% confidence intervals (CI). In addition, calibration was evaluated by comparing predicted and observed risks. Results Of the 1745 dialysis patients, 183 patients had a bleeding event, corresponding to an incidence rate of 5.23/100 person-years. The HASBLED [C-statistic of 0.58 (95% CI 0.54–0.62)], ATRIA [C-statistic of 0.55 (95% CI 0.51–0.60)], HEMORR2HAGES [C-statistic of 0.56 (95% CI 0.52–0.61)] and ORBIT [C-statistic of 0.56 (95% CI 0.52–0.61)] risk scores had poor discriminative performances in dialysis patients. Furthermore, the calibration analyses showed that patients with a low risk of bleeding according to the HASBLED, ATRIA, HEMORR2HAGES and ORBIT bleeding risk scores had higher incidence rates for bleeding in our cohort than predicted. Conclusions The HASBLED, ATRIA, HEMORR2HAGES and ORBIT bleeding risk scores had poor predictive abilities in dialysis patients. Therefore, these bleeding risk scores may not be useful in this population.

Value-based health care is increasingly promoted as a strategy for improving care quality by benchmarking outcomes that matter to patients relative to the cost of obtaining those outcomes. To support the shift toward value-based health care in chronic kidney disease (CKD), the International Consortium for Health Outcomes Measurement (ICHOM) assembled an international working group of health professionals and patient representatives to develop a standardized minimum set of patient-centered outcomes targeted for clinical use. The considered outcomes and patient- reported outcome measures were generated from systematic literature reviews. Feedback was sought from patients and health professionals. Patients with very high-risk CKD (stages G3a/A3 and G3b/A2- G5, including dialysis, kidney transplantation, and conservative care) were selected as the target population. Using an online modified Delphi process, outcomes important to all patients were selected, such as survival and hospitalization, and to treatment-specific subgroups, such as vascular access survival and kidney allograft survival. Patient-reported outcome measures were included to capture domains of health-related quality of life, which were rated as the most important outcomes by patients. Demographic and clinical variables were identified to be used as case-mix adjusters. Use of these consensus recommendations could enable institutions to monitor, compare, and improve the quality of their CKD care.

Background and Aims Chronic kidney disease (CKD) and atrial fibrillation (AF) are both risk factors for bleeding, stroke and mortality. Whether the combination of CKD and AF leads to higher risks of bleeding, stroke and mortality than CKD or AF alone is not known. The aim of our study was to investigate the interaction between CKD and AF and outcomes. Method We included 12,394 subjects referred to the University Medical Center Utrecht (the Netherlands) from September 1996 to February 2018f for an out-patient visit with classical risk factors for arterial disease or with symptomatic arterial disease (Utrecht Cardiovascular Cohort Second Manifestation of Arterial disease (UCC-SMART) cohort). Hazard ratios (HRs) with 95% confidence intervals (CIs) for bleeding, ischemic stroke or mortality were calculated with Cox proportional hazards analyses. Presence of additive interaction between AF and CKD was examined by calculating the relative excess risk due to interaction (RERI), the attributable proportion (AP) due to interaction and the synergy index (S). Results Of the 12,394 patients, 699 patients had AF, 2,752 patients had CKD and 325 patients had both AF and CKD. Overall, 382 patients developed a first bleeding event, 421 patients had a first ischemic stroke and 2203 patients died. Patients with both CKD and AF had a 3.0-fold (95% CI 2.0-4.4) increased risk for bleeding, a 4.2-fold (95% CI 3.0-6.0) increased ischemic stroke risk and a 2.2-fold (95% CI 1.9-2.6) increased mortality risk after adjustment as compared with subjects without AF and CKD (Table 1). Although bleeding and mortality risks were highest for the combination of AF and CKD, we did not find interaction between AF and CKD. However, we found an interaction between AF and CKD for ischemic stroke risk (RERI 1.88 (95% CI 0.31-3.46), AP 0.45 (95% CI 0.17-0.72) and S 2.40 (95% CI 1.08-5.32)) (Table 1). Conclusion The combination of CKD and AF is associated with high risks for bleeding, ischemic stroke and mortality. There is a positive interaction between AF and CKD for ischemic stroke risk, but not for bleeding or mortality.

Patient‐reported outcome measures (PROMs) are increasingly being used in nephrology care. However, in contrast to well‐known clinical measures such as blood pressure, health‐care professionals are less familiar with PROMs and the interpretation of PROM scores is therefore perceived as challenging. In this paper, we provide insight into the interpretation of PROM scores by introducing the different types and characteristics of PROMs, and the most relevant concepts for the interpretation of PROM scores. Concepts such as minimal detectable change, minimal important change and response shift are explained and illustrated with examples from nephrology care., SUMMARY AT A GLANCE The review provides insight into the interpretation of PROM scores by introducing the different types and characteristics of PROMs, and the most relevant concepts for the interpretation of PROM scores, ie minimal detectable change, minimal important change and response shift.

Background and Aims Older patients with advanced chronic kidney disease (CKD) are at increased risk for a severe course of the coronavirus disease-2019 (COVID-19) and vulnerable to mental health problems. We aimed to investigate prevalence and associated patient (demographic and clinical) characteristics of mental wellbeing (health-related quality of life [HRQoL] and symptoms of depression and anxiety) before and during the COVID-19 pandemic in older patients with advanced CKD. Method An ongoing Dutch multicentre prospective cohort study enrols patients of ≥70 years with an eGFR Results The 82 included patients had a median age of 77.5 years (inter-quartile range 73.9-82.1), 77% was male and none had tested positive for COVID-19. Cross-sectionally, 67% of the patients reported to be more anxious for COVID-19 because of their kidney disease, and 43% of the patients stated that their quality of life was reduced due to the COVID-19 pandemic (Figure 1). Higher COVID-19-related stress was associated with a lower education level (p=0.036), and patients who reported to feel more down due to COVID-19 were more often female (p=0.020). Anxiety scores were higher among females compared to males (median 4.0 [IQR 3.0-9.0] versus 2.0 [0.0-6.0], p=0.020), and weakly associated to a decline in eGFR (correlation coefficient 0.197, p=0.023). Compared to pre-COVID-19, presence of depressive symptoms had increased (11% to 22%; p=0.022) and physical HRQoL declined (40.4±10.1 to 36.1±10.4, p Conclusion Our findings show that older patients with advanced CKD suffered from disease-related anxiety for COVID-19, increased depressive symptoms, and reduced physical HRQOL during the COVID-19 pandemic. The impact of the pandemic on this vulnerable patient group extends beyond increased mortality risk, and awareness of mental health problems during the pandemic is essential. More in-depth investigation on disease-related COVID-19 concerns and its implications for the CKD population is needed.

Background and Aims Treatment withdrawal is an important cause of death among dialysis-dependent patients. Widely variable withdrawal rates were reported in studies using varying designs and definitions in culturally different regions of the world, limiting comparability of individual studies. Cessation of life-prolonging treatment is a well-accepted option in the Netherlands, however it is unclear if these premises result in higher dialysis withdrawal rates and if this effect is generalisable. This study aims to describe dialysis withdrawal practice in the Netherlands, focussing on time trends and practice variation between centres. Method Patient data was retrieved from RENINE, the Dutch national registration which includes nearly all patients requiring dialysis for at least 28 days. All patients who initiated maintenance dialysis from January 1, 2000, to December 31, 2020, and died within this period were included for analysis. Since the primary aim of this study concerned cause of death on dialysis, data of patients in whom dialysis was stopped due to kidney transplantation or recovery of kidney function, were excluded. Main outcome was death by dialysis withdrawal, as registered by the treating physician using ERA-EDTA codes. Other causes of death were used as comparison. Time trends for dialysis withdrawal were first analysed as unadjusted data (proportion per year). Univariable logistic regression analyses were then used to identify factors associated with dialysis withdrawal, including year of death in five-year strata. A multivariable model was subsequently used to determine risks, adjusting for factors associated with dialysis withdrawal. Centre variation was compared visually by using funnel plots. Results A total of 34.692 patients commenced maintenance dialysis of which 20.389 died. After applying exclusion criteria, a cohort of 18.412 patients was used for analysis. Dialysis withdrawal was an increasingly common cause of death, increasing from 13.5% in 2000 to 31.2% in 2019 (22.1% overall). In multivariable analysis, increasing age, female sex, increasing dialysis vintage, haemodialysis as treatment modality, and year of death were independent factors associated with death by dialysis withdrawal. Centre variation was large, even after correction for confounding factors (36.6% outside 95% control limits). Conclusion Treatment withdrawal has become the main cause of death in the Netherlands among dialysis-dependent patients during 2000-2020. Large practice variations were observed between centres, even after correction for confounding factors. These findings emphasize the need for timely advance care planning and urge treating health care professionals to better inform their patients when choosing to start dialysis or not.

Key Summary points Aim To propose a consensus-based geriatric assessment for optimizing both routine care and research in older patients with advanced chronic kidney disease. Findings Using a pragmatic approach, we reached consensus on a suitable nephrology-tailored geriatric assessment to routinely identify major geriatric impairments in older patients with advanced chronic kidney disease. This geriatric assessment contains instruments in functional, cognitive, psychological, somatic, patient preferences, nutritional status, and social domains, and can be administered with patient questionnaires and professional-administered instruments by nurse (practitioners) in approximately 20 and 40 minutes, respectively. Message We propose a consensus test set for standardized nephrology-tailored geriatric assessment, which is currently being implemented in multiple hospitals and studies, to benefit clinical care for older patients with advanced chronic kidney disease and enhance research comparability. Supplementary Information The online version contains supplementary material available at 10.1007/s41999-021-00498-0., Purpose Unidentified cognitive decline and other geriatric impairments are prevalent in older patients with advanced chronic kidney disease (CKD). Despite guideline recommendation of geriatric evaluation, routine geriatric assessment is not common in these patients. While high burden of vascular disease and existing pre-dialysis care pathways mandate a tailored geriatric assessment, no consensus exists on which instruments are most suitable in this population to identify geriatric impairments. Therefore, the aim of this study was to propose a geriatric assessment, based on multidisciplinary consensus, to routinely identify major geriatric impairments in older people with advanced CKD. Methods A pragmatic approach was chosen, which included focus groups, literature review, inventory of current practices, an expert consensus meeting, and pilot testing. In preparation of the consensus meeting, we composed a project team and an expert panel (n = 33), drafted selection criteria for the selection of instruments, and assessed potential instruments for the geriatric assessment. Results Selection criteria related to general geriatric domains, clinical relevance, feasibility, and duration of the assessment. The consensus-assessment contains instruments in functional, cognitive, psychological, somatic, patient preferences, nutritional status, and social domains. Administration of (seven) patient questionnaires and (ten) professional-administered instruments, by nurse (practitioners), takes estimated 20 and 40 min, respectively. Results are discussed in a multidisciplinary meeting including at least nephrology and geriatric expertise, informing nephrology treatment decisions, and follow-up interventions among which comprehensive geriatric assessment. Conclusion This first multidisciplinary consensus on nephrology-tailored geriatric assessment intent to benefit clinical care and enhance research comparability for older patients with advanced CKD. Supplementary Information The online version contains supplementary material available at 10.1007/s41999-021-00498-0.

Graft function and patient survival are traditionally the most used parameters to assess the objective benefits of kidney transplantation. Monitoring graft function, along with therapeutic drug concentrations and transplant complications, comprises the essence of outpatient management in kidney transplant recipients (KTRs). However, the patient’s perspective is not always included in this process. Patients’ perspectives on their health after kidney transplantation, albeit subjective, are increasingly acknowledged as valuable healthcare outcomes and should be considered in order to provide patient-centred healthcare. Such outcomes are known as patient-reported outcomes (PROs; e.g. health-related quality of life and symptom burden) and are captured using PRO measures (PROMs). So far, PROMs have not been routinely used in clinical care for KTRs. In this review we will introduce PROMs and their potential application and value in the field of kidney transplantation, describe commonly used PROMs in KTRs and discuss structural PROMs implementation into kidney transplantation care.

Background Conservative care (CC) may be a valid alternative to dialysis for certain older patients with advanced chronic kidney disease (CKD). A model that predicts patient prognosis on both treatment pathways could be of value in shared decision-making. Therefore, the aim is to develop a prediction tool that predicts the mortality risk for the same patient for both dialysis and CC from the time of treatment decision. Methods CKD Stage 4/5 patients aged ≥70 years, treated at a single centre in the Netherlands, were included between 2004 and 2016. Predictors were collected at treatment decision and selected based on literature and an expert panel. Outcome was 2-year mortality. Basic and extended logistic regression models were developed for both the dialysis and CC groups. These models were internally validated with bootstrapping. Model performance was assessed with discrimination and calibration. Results In total, 366 patients were included, of which 126 chose CC. Pre-selected predictors for the basic model were age, estimated glomerular filtration rate, malignancy and cardiovascular disease. Discrimination was moderate, with optimism-corrected C-statistics ranging from 0.675 to 0.750. Calibration plots showed good calibration. Conclusions A prediction tool that predicts 2-year mortality was developed to provide older advanced CKD patients with individualized prognosis estimates for both dialysis and CC. Future studies are needed to test whether our findings hold in other CKD populations. Following external validation, this prediction tool could be used to compare a patient’s prognosis on both dialysis and CC, and help to inform treatment decision-making.