Rationale & Objective: Previous studies indicate survival benefit for dialysis over conservative kidney management (CKM), which attenuates in patients ≥80 years or with high comorbidity. Most studies did not differentiate dialysis suitability among those choosing CKM, potentially biasing outcomes. We aimed to describe survival outcomes in patients choosing dialysis, patients suitable for dialysis who chose CKM, and patients less suitable for dialysis who chose CKM. Study design: Single-center cohort study. Setting & Participants: We included patients aged ≥65 years with a documented treatment decision for dialysis or CKM between 2017 and 2024. Exposure: Chosen treatment (dialysis or CKM). Patients choosing CKM were classified as suitable or less suitable for dialysis, based on the treating nephrologist’s. Outcome: The primary outcome was all-cause mortality. Analytical Approach: Descriptive, using Kaplan–Meier estimates and Cox proportional hazard models without adjustment for confounding. Results: Median survival from treatment decision was 53 (dialysis), 32 (CKM, suitable for dialysis), and 18 months (CKM, less suitable for dialysis), with unadjusted hazard ratios of 2.11 (CKM, suitable for dialysis vs dialysis; 95% CI 1.59-2.80) and 3.23 (less suitable for dialysis vs dialysis; 95% CI 2.47-4.23). Among patients aged ≥80 years, hazard ratios were 1.89 (0.99-1.74) for CKM suitable for dialysis versus dialysis and 2.35 (1.31-4.64) for CKM less suitable for dialysis versus dialysis. Thirteen percent of patients who initially chose dialysis switched to CKM, whereas 1% transitioned from CKM to dialysis. Limitations: Subjectivity in dialysis suitability assessment. Conclusions: In this cohort of older patients with kidney failure, survival outcomes in patients choosing CKM suitable for dialysis were longer than previously reported. These findings highlight the importance of distinguishing dialysis suitability when evaluating survival outcomes in CKM and dialysis. This supports more individualized shared decision making in older adults with advanced kidney disease. Plain-Language Summary: Older adults with advanced kidney disease often face a difficult decision whether to choose dialysis or conservative kidney management (CKM). Earlier studies did not clarify whether patients opting for CKM were medically eligible for dialysis, making results less applicable for people who face a genuine choice between treatments. This study described survival outcomes in people aged 65 years and older. People who chose dialysis lived about 53 months after making their treatment decision, people who chose CKM and were considered suitable for dialysis lived about 32 months, and people who chose CKM and were considered less suitable for dialysis lived about 18 months. These findings support individualized shared decision making and highlight the importance of considering dialysis suitability.

BACKGROUND:Older patients with chronic kidney disease (CKD) often experience relatively slow kidney function decline, suggesting that, despite meeting referral criteria, primary care management may be appropriate. We assessed guideline recommended CKD management in patients with CKD stage 4-5 across primary and nephrology care. METHODS:Population-based study using routine healthcare data from primary care and hospitals, including patients ≥ 65 years with incident or prevalent eGFR <30 ml/min/1.73m2 between 2015 and 2024. Guideline adherence was evaluated using thirteen quality indicators, calculated as the proportion of patients fulfilling these indicators or the proportion of follow-up time covered by adherent care. RESULTS:Of 1969 patients (mean age 81.8 years, median eGFR 25 ml/min/1.73m2), 61.2% were managed in primary care. These patients were older and were more often considered frail. In primary care, monitoring covered 82.5% of follow-up time for kidney function, 47.8% for albuminuria, 76.6% for blood pressure, 85.6% for haemoglobin, 50.9% for LDL-cholesterol and 68.3% for HbA1c among patients with diabetes. Corresponding estimates in nephrology care were 86.8%, 65.2%, 84.4%, 97.5%, 68.3% and 84.9%, respectively. Monitoring of metabolic complications, which falls beyond primary care guidelines, was 28.4%-79.2% in primary care and 73.6%-97.8% in nephrology care. RAAS inhibitors were prescribed in 56.9% (primary care) and 84.4% (nephrology care); SGLT2 inhibitors in 4.3% and 10.1%, and NSAIDs in both settings < 7%. Guideline adherence did not vary by socio-economic status or country of origin. In primary care, adherence was higher in patients with diabetes. CONCLUSION:The majority of older patients with CKD stage 4-5 are managed in primary care. Guideline adherence varied across care settings, which served substantially different patient populations. Higher adherence in patients with diabetes, typically enrolled in structured disease management programs, suggests that embedding similar structured approaches may enhance adherence to CKD guideline in primary care.

OBJECTIVE:Effective patient-clinician communication is essential in chronic kidney disease (CKD) to support treatment adherence and slow down disease progression. In this proof-of-concept study we evaluated the effects of a CKD dashboard, designed to visualize clinical and patient-reported outcomes during healthcare visits, on patient activation and shared decision making (SDM). METHODS:We conducted a prospective, multiple-methods pre-post study in two Dutch teaching hospitals (January 2021-June 2022); one intervention hospital where the dashboard was implemented, one control. Patient questionnaires were collected at three time points: pre-implementation (T0); post-implementation (T1); one year after implementation (T2). Healthcare visits at T0 and T1 were audio-recorded. Primary outcome was the Patient Activation Measure, PAM, range 0-100). Secondary outcomes included SDM, range 0-24, motivational interviewing (MI), and patient-reported experiences of care. RESULTS:In total, 126 patients participated. The mean PAM at T0 was 56.6 in the intervention hospital, with no significant changes at T1 (56.6) or T2 (56.2), nor significant differences with the control hospital. Secondary outcomes showed similar patterns. We analyzed 247 decisions from 193 recorded visits. Median SDM scores did not differ significantly between hospitals or over time (T0: Md=4.5 vs. 3.5; T1: Md=6.0 vs. 7.25). However, visits in which the dashboard was used as intended showed higher SDM levels compared to visits in which it was not used as intended: Md= 8.0 (IQR,13.5-3.5) versus 2.75 (IQR, 4.4-0.0), p = 0.008. The dashboard encouraged discussion of under-addressed topics, such as mental and sexual health, without neglecting other CKD-related issues. Patients expressed satisfaction with the information provided. CONCLUSION:Although patient activation and SDM levels did not change in the timeframe of this study, the dashboard facilitated broader discussions, contributing to actionable outcomes. PRACTICE IMPLICATIONS:Dashboard effects may increase when successfully embedded in routine care and accessible to patients at home. Trainings in applying SDM across a broad range of decisions is needed. TRIAL REGISTRATION:NCT05931978.

BACKGROUND & AIMS:Malnutrition is common in older patients with advanced chronic kidney disease (CKD). This study investigates whether nutritional status is associated with 1-year mortality and CKD progression in this population. METHODS:Patients ≥65 years (eGFR 20-10 mL/min/1.73 m2) were included from the observational prospective DIALOGICA study. Patients were classified as being at risk of malnutrition with a Mini Nutritional Assessment Short-Form (MNA-SF) score ≤11 and as having a normal nutritional status with scores ≥12. One-year mortality was defined as death (all-cause) occurring within 1-year and CKD progression as eGFR decline <10 mL/min/1.73 m2 and/or initiation of kidney replacement therapy (KRT) within 1-year from inclusion. Associations between nutritional status and mortality were assessed using multivariable Cox proportional hazards models, associations between nutritional status and CKD progression were assessed using multivariable Fine-Gray models. RESULTS:610 patients were included (mean age 76.6 ± 5.8 years, mean eGFR 14.8 ± 3.1 mL/min/1.73 m2), with 160 patients (26.2%) at risk of malnutrition. During follow-up, 55 patients (9.0%) died and 154 patients (25.2%) experienced CKD progression. Patients at risk of malnutrition had significantly higher 1-year mortality risk (adjusted hazard ratio or HR 1.88, 95% CI 1.08; 3.25) but not significantly higher CKD progression risk (adjusted subdistributional-HR 1.06, 95% CI 0.71; 1.59). CONCLUSION:Older patients with advanced CKD and malnutrition risk face significantly higher 1-year mortality risk but not higher CKD progression risk. These findings may help identify vulnerable patients who are at high risk of early mortality who may benefit from dietary interventions.

Clinical and epidemiological research is indispensable for improvements in evidence-based healthcare and health outcomes, but it also leaves important gaps in our understanding of health and illness. Qualitative research has been increasingly recognized as a key to addressing some of these gaps, using both exploratory (to gain a more complete and in-depth understanding of problems) and explanatory (to explain quantitative results) approaches. By finding out 'what's going on' and bringing people's stories to light, qualitative research is widely advocated as crucial in enhancing patient-centered research and healthcare. To date, most clinicians, clinical researchers and epidemiologists are relatively unfamiliar with and untrained in qualitative research-a type of research that, compared with quantitative research, requires different research skills and uses a different jargon, type of reasoning, and methods. This article aims to equip them with the basic knowledge necessary to appraise and design qualitative research. Specifically, we provide a comprehensive overview of (i) what qualitative research is, including various examples of qualitative research questions and explanations of the contrasting properties of quantitative and qualitative research; (ii) what constitutes the added value of qualitative research in the clinical and epidemiological context, illustrated using numerous research studies conducted within nephrology; and (iii) practical guidelines for designing qualitative research within this context, including a self-developed checklist containing essential information to include in qualitative research protocols. In doing so, we hope to enrich clinical and epidemiological research with complementary qualitative evidence-amongst others, invaluable insights into patients' lived experiences and perceptions-and thereby greatly enhance patient-centered research and evidence-based healthcare.

Background:Intradialytic hypotension (IDH) has been associated with both morbidity and mortality. Yet, as IDH often occurs asymptomatic, it might be easily missed with routine twice per hour brachial artery cuff-blood pressure (BAC-BP) readings. This study evaluated differences in IDH detection between intermittent BAC-BP and continuous BP monitoring with a finger cuff (FC-BP). Validation of the FC device was an additional objective. Methods:In 40 chronic dialysis patients, intradialytic BP was measured during four sessions using (i) BAC-BP every 15 minutes and (ii) beat-to-beat FC-BP readings, which were averaged over 20-seconds intervals. IDH was defined as a systolic BP (SBP) <90 or <100 mmHg, depending on pre-dialysis SBP. Only FC measurements with an acceptable accuracy (i.e. mean SBP bias ≤10 mmHg) were used for the IDH analysis. For validation, sequential same-arm BP measurements were compared, using Bland-Altman analyses to assess agreement and four-quadrant plots to evaluate concordance. Results:For IDH analysis, 144 BAC-BP readings and 18 163 FC-BP measurements were recorded in 106 hours. While BAC-BP identified 20 IDH episodes, 441 were detected by FC-BP. For validation, Bland-Altman analyses of 1221 paired BP readings showed a mean bias ± limits of agreement of -13.3 ± 44.5 mmHg for SBP and -13.3 ± 25.5 mmHg for diastolic BP. Only 27.7% of the paired FC-BP readings met the acceptable accuracy criterion. Concordance rates were 34.3% and 36.3%, respectively. Conclusions:First, the occurrence of IDH is severely underestimated with intermittent BP monitoring. Second, FC-BP appears unsuitable for routine intradialytic BP monitoring due to its poor accuracy, precision, and concordance.

Individualized prognostic information can help patients with chronic kidney disease (CKD) understand and prepare for their future, facilitating informed shared decision-making. While research has indicated that CKD patients want more information about their future, little is known about their specific prognostic needs. Therefore, this study aims to explore how patients with CKD perceive their future and what their prognostic needs are. A survey was constructed with patient representatives, and distributed amongst adult CKD patients (all stages) through patient associations and healthcare professionals in two Dutch hospitals. Following an exploratory-descriptive qualitative approach, answers to four open-ended questions of 163 patients were analysed inductively using thematic analysis. Patients described a wide range of emotions when thinking about their future with CKD, including negative emotions like uncertainty, fear, sadness, and to a lesser extent, anger. However, some patients maintained emotional neutrality or described experiencing positive emotions like calmness, hope and trust. Additionally, patients had diverse prognostic needs, focusing on different topics like CKD treatment, kidney disease progression, self-management, symptoms, life expectancy and life participation. While most patients wanted more personalized prognostic information on these topics, some felt like they were already sufficiently informed about their future or preferred to live in the present moment. Our findings show that CKD patients experience a wide variety of emotions regarding their future. Despite conversations about their future taking place in nephrological practice, there remain unmet questions regarding the future. These results underline the importance of adopting a personalized approach when discussing the future with CKD patients, acknowledging and taking the diverse emotional responses and individual preferences into account.

Background:Fatigue is a common symptom of chronic kidney disease (CKD). Predominantly qualitative research among dialysis patients has contributed to our knowledge about CKD patients' fatigue experiences and perceptions. This nationwide survey study aimed to explore in different CKD populations: (i) patients' experienced fatigue burden, its impact on daily life, and presumed causes of fatigue; and (ii) patients' experiences and needs regarding support, discussion, and treatment of fatigue. Methods:A survey assessing patients' fatigue experiences and needs was constructed in co-creation with the Dutch Kidney Patients Association. Descriptive statistics were used to summarize results and stratified by CKD populations [CKD without kidney replacement therapy (KRT), receiving dialysis, after kidney transplantation (KTx)], gender, and age. Results:A high fatigue burden was found across all CKD populations (n = 414;144 CKD without KRT/39 dialysis/231 KTx): fatigue was often experienced (94.7%), present for >6 months (90.3%), in the top three most burdensome symptoms (86.3%), and presumed causes were multifactorial. Younger patients were limited in more life domains than elderly. Some patients (32.1%) never or rarely discussed fatigue with their physician, did not receive treatment (67.8%), or felt the advice/treatment(s) insufficiently managed their fatigue (58.6%). More women and 18-50-year-old patients reported insufficient social support. Patients desired acknowledgement and more information about treatments and coping strategies for (consequences of) fatigue. Conclusion:High fatigue burdens and insufficient support are experienced across all CKD populations, gender, and age groups. To address patients' unfulfilled needs, it is important to structurally measure and discuss fatigue in routine nephrology care, strengthen social support, and provide patient-centred multidisciplinary symptom management.

BACKGROUND:Frailty is common in older patients with advanced chronic kidney disease (CKD) and is associated with mortality. This study investigates whether the Clinical Frailty Scale (CFS) and Surprise Question ('Would you be surprised if this patient died in the next 12 months?', SQ) are associated with one-year mortality and whether combining risk assessments has benefits. METHODS:Patients ≥65 years with estimated glomerular filtration rate (eGFR) 20 - 10 mL/min/1.73m2 were included from the ongoing prospective observational cohort study DIALysis or not: Outcomes in older kidney patients with GerIatriC Assessment (DIALOGICA, first inclusion May 13th, 2020). Frailty was screened using the CFS, the SQ was answered using clinical impression ('gestalt'). Patients were classified 'high risk' with CFS-score ≥5 and/or SQ-answer 'no'. Four subgroups were formed: High risk: CFS ≥5 & SQ 'no', High risk: CFS ≥5 only, High risk: SQ 'no' only and Low risk: CFS <5 & SQ 'yes'. Associations with one-year mortality were explored using Kaplan-Meier curves and adjusted Cox proportional hazards models. RESULTS:Overall, 589 patients were included (male sex 70%, mean age 77±6 years, mean eGFR 15±3 mL/min/1.73m2). CFS-score ≥5 was found in 125 patients (21%), 112 patients (19%) had SQ-answer 'no'. Both CFS-score ≥5 (adjusted HR 3.09, 95% CI 1.75;5.54) and SQ-answer 'no' (adjusted HR 1.96, 95% CI 1.09;3.52) were associated with higher mortality risk. Subgroup High risk: CFS ≥5 & SQ 'no' had the highest mortality risk (adjusted HR 3.37, 95% CI 1.65;6.91). CONCLUSIONS:Both CFS-score ≥5 and SQ-answer 'no' are associated with higher one-year mortality risk in older patients with advanced CKD. The strongest association with mortality was found by combining both assessments, when both indicate high risk. These findings may help older patients and nephrologists make better informed treatment decisions and initiate timely advance care planning conversations.

ABSTRACT Background Patients on haemodialysis (HD) generally experience poor health-related quality of life (HRQoL) and a broad range of physical and mental symptoms, but it is unknown whether this differs between younger and older patients. We aimed to describe the trajectories of HRQoL and symptom burden of patients <70 and ≥70 years old and to assess the impact of symptom burden on HRQoL. Methods In incident Dutch HD patients, HRQoL and symptoms were measured with the 12-item Short Form Health Survey and Dialysis Symptom Index. We used linear mixed models for examining the trajectories of HRQoL and symptom burden during the first year of dialysis and linear regression for the impact of symptom burden on HRQoL. Results In 774 patients, the trajectories of physical HRQoL, mental HRQoL and symptom burden were stable during the first year of dialysis. Compared with patients <70 years of age, patients ≥70 years reported similar physical HRQoL {mean difference −0.61 [95% confidence interval (CI) −1.86–0.63]}, better mental HRQoL [1.77 (95% CI 0.54–3.01)] and lower symptom burden [−2.38 (95% CI −5.08–0.32)]. With increasing symptom burden, physical HRQoL declined more in older than in younger patients (β = −0.287 versus −0.189, respectively; P-value for interaction = .007). For mental HRQoL, this decrease was similar in both age groups (β = −0.295 versus −0.288, P = .847). Conclusion Older HD patients generally experience a better mental HRQoL and a (non-statistically significant) lower symptom burden compared with younger patients. Their physical HRQoL declines more rapidly with increasing symptom burden.

Abstract Background and Aims The increasing prevalence of chronic kidney disease (CKD), an aging population and advancements in treatment options collectively contribute to a rise in older patients with a functioning kidney transplant (KTX) or undergoing dialysis. These treatments are associated with extensive healthcare utilisation, placing substantial demands on both patients and the healthcare system. Healthcare utilisation typically increases near the end of life, and is associated with increased costs. However, little is known about the end-of-life healthcare utilisation of patients receiving kidney replacement therapy (KRT). Therefore, our study aims to assess healthcare utilisation and costs during the last year of life. Method We analysed Dutch health insurance claims data from patients aged >65 years on KRT who deceased between June 2016 and December 2021. We matched each patient with two controls, defined as individuals who died within the same calendar year without any insurance claims related to CKD or KRT. Matching was performed on sex, age and socio-economic status. The primary outcomes were healthcare utilisation and costs in the last twelve months of life for patients treated with different KRT modalities and compared to matched controls. Healthcare utilisation was detailed at hospital and intensive care unit (ICU) admissions, emergency department (ED) and outpatient department (OPD) visits, hospital daycare and institutionalised care. Healthcare costs encompassed costs related to primary care, hospital care (inpatient and outpatient), mental care, institutionalised care, prescription medication, transportation and other costs. Hospital care costs were categorised as KRT-related and -unrelated costs. Results In total 7279 decedents were included; 4614 haemodialysis patients (HD), 766 peritoneal dialysis (PD) patients and 1899 KTx recipients. KRT patients had a mean age of 77.6 ± 6.6 years, with 64% being male, and had significantly more comorbidities than the control group. In the year preceding death, KRT patients had significantly more hospital admissions, ICU admissions, ED visits, outpatient visits, hospital daycare and institutionalised care than controls (see Fig. 1). When comparing across KRT-modalities, KTx patients were more often admitted to the ICU than HD and PD patients (p = 0.001 and p = 0.024, respectively). For both HD, PD and KTx patients, the mean number of days admitted to the hospital and ICU, as well as ED visits and OPD visits significantly increased in last three months preceding death, compared to the initial nine months of the last year of life (p < 0.0001). Mean total healthcare costs in the last year of life were €59.489 for KTx patients, €108.294 for PD and €117.520 for HD patients, compared to €19.820 for the controls. The majority of costs for dialysis patients were attributed to KRT, accounting for 55.5% (€65.216) and 60.0% (€64.559) of the total expenditures for HD and PD patients, respectively. In contrast, KRT-related costs constituted 25.7% (€15.262) of the total expenses in KTx patients. Besides substantial KRT-related costs, KRT-patients also incurred higher costs for specialist care in the hospital, primary care, medication and transport, compared to controls. Conclusion Healthcare utilisation is substantial for older KRT patients and intensifies during the last year of life. This is accompanied with elevated costs. Further research is necessary to evaluate the impact of healthcare utilisation on the quality of life and whether advanced care planning could prevent overutilisation.

Rationale & ObjectiveOlder people with progressive chronic kidney disease (CKD) have complex health care needs. Geriatric evaluation preceding decision-making for kidney replacement is recommended in guidelines, but implementation is lacking in routine care. We aimed to evaluate implementation of geriatric assessment in CKD care.Study DesignMixed-methods implementation study.Setting& Participants: Dutch nephrology centers were approached for implementation of geriatric assessment in patients aged ≥70 years and with an eGFR ≤20mL/min.Quality Improvement ActivitiesWe implementated a consensus-based nephrology-tailored geriatric assessment: a patient-questionnaire and professional-administered test set comprising 16 instruments covering functional, cognitive, psycho-social and somatic domains and patient-reported outcome measures.OutcomesWe aimed for implementation in 10 centers and 200 patients. Implementation was evaluated by (i) perceived enablers and barriers of implementation, including integration in work routines (Normalization MeAsure Development tool), and (ii) relevance of the instruments to routine care for the target population.Analytical ApproachVariations in implementation practices were described based on field notes. The post-implementation survey among healthcare professionals was analyzed descriptively, using an explanatory qualitative approach for open-ended questions.ResultsGeriatric assessment was implemented in 10 centers among n=191 patients. Survey respondents (n=71, 88% response rate) identified determinants that facilitated implementation: i.e. multidisciplinary collaboration (with geriatricians) -meetings and reports, and execution of assessments by nurses. Barriers to implementation were: patient illiteracy or language barrier, time constrains, and patient burden. Professionals considered geriatric assessment sufficiently integrated into work routines (mean 6.7/10, SD2.0), but also subject to improvement. Likewise, the relevance of geriatric assessment for routine care was scored as 7.8/10, SD1.2). The Clinical Frailty Score and Montreal Cognitive Assessment were perceived most relevant instruments.LimitationsSelection bias of interventions’ early adopters may limit generalizability.ConclusionsGeriatric assessment could successfully be integrated in CKD care, and was perceived relevant to healthcare professionals.

Impaired cognition, poor health-related quality of life (HRQoL) and depressive symptoms are common in older patients with kidney failure. Understanding what influences HRQoL is important, as older patients regard HRQoL as a health priority. This study examines whether cognitive functioning is associated with HRQoL and whether depressive symptoms mediate this effect in older patients with kidney failure. Outpatients aged ≥ 65 years from 35 Dutch and Belgian hospitals with eGFR 20–10 mL/min/1.73 m2 were included from the ongoing DIALOGICA study. Cognitive functioning was assessed using the Montreal Cognitive Assessment. Depressive symptoms were screened with 2 Whooley Questions and thereafter assessed with the 15-item Geriatric Depression Scale. HRQoL was assessed using the 12-item Short-Form Health Survey. To assess whether cognitive functioning is associated with HRQoL, cross-sectional multivariable linear regression analyses were performed. Subsequent mediation analyses were performed with PROCESS using the product method. In total, 403 patients were included, with a mean age of 76.5 years (SD 5.8) and estimated glomerular filtration rate (eGFR) of 14.5 mL/min/1.73 m2 (SD 3.0). Cognitive functioning was associated with mental HRQoL (adjusted β 0.30, 95

Prognostic models can strongly support individualized care provision and well-informed shared decision making. There has been an upsurge of prognostic research in the field of nephrology, but the uptake of prognostic models in clinical practice remains limited. Therefore, we map out the research field of prognostic models for kidney patients and provide directions on how to proceed from here. We performed a scoping review of studies developing, validating, or updating a prognostic model for patients with CKD. We searched all published models in PubMed and Embase and report predicted outcomes, methodological quality, and validation and/or updating efforts. We found 602 studies, of which 30.1% concerned CKD populations, 31.6% dialysis populations, and 38.4% kidney transplantation populations. The most frequently predicted outcomes were mortality ( n =129), kidney disease progression ( n =75), and kidney graft survival ( n =54). Most studies provided discrimination measures (80.4%), but much less showed calibration results (43.4%). Of the 415 development studies, 28.0% did not perform any validation and 57.6% performed only internal validation. Moreover, only 111 models (26.7%) were externally validated either in the development study itself or in an independent external validation study. Finally, in 45.8% of development studies no useable version of the model was reported. To conclude, many prognostic models have been developed for patients with CKD, mainly for outcomes related to kidney disease progression and patient/graft survival. To bridge the gap between prediction research and kidney patient care, patient-reported outcomes, methodological rigor, complete reporting of prognostic models, external validation, updating, and impact assessment urgently need more attention.

BACKGROUND:Conservative care (CC) is a viable treatment option for some patients with kidney failure. Choosing between dialysis and CC can be a complex decision in which involvement of patients is desirable. Gaining insight into the experiences and preferences of patients regarding this decision-making process is an important initial step to improve care. We aimed to identify what is known about the perspective of patients regarding decision-making when considering CC.METHODS:PubMed, EMBASE and Cochrane databases were systematically searched on 23 February 2023 for qualitative and quantitative studies on patient-reported experiences on decision-making about CC. Data were analysed thematically.RESULTS:Twenty articles were included. We identified three major themes: creating awareness about disease and treatment choice, decision support and motivation to choose CC. Patients were often not aware of the option to choose CC. Patients felt supported by their loved ones during the decision-making process, although they perceived they made the final decision to choose CC themselves. Some patients felt pressured by their healthcare professional to choose dialysis. Reported reasons to choose CC were maintaining quality of life, treatment burden of dialysis, cost and the desire not to be a burden to others. In general, patients were satisfied with their decision for CC.CONCLUSIONS:By focussing on the perspective of patients, we identified a wide range of patient experiences and preferences regarding the decision-making process. These findings can help to improve the complex decision-making process between dialysis and CC and to provide patient-centred care.

Abstract Background and Aims Impaired cognitive function and reduced health-related quality of life (HRQoL) are common in older patients with chronic kidney disease (CKD) with severely reduced GFR and kidney failure. Older patients with CKD often regard HRQoL as a health priority, but it is unknown whether cognitive function associates with HRQoL and whether depressive symptoms mediate this association. We therefore aim to examine the association between cognitive function and HRQoL, and explore the mediating role of depressive symptoms. Method Patients aged 65 years and older with an eGFR between 20 and 10 mL/min/1.73 m2 participating in the ongoing DIALysis or not: Outcomes in older kidney patients with GerIatriC Assessment (DIALOGICA) study were included. Cognitive function, depressive symptoms and HRQoL were assessed using the Montreal Cognitive Assessment (MoCA), Geriatric Depression Scale (GDS-15) and Twelve-Item Short Form Health Survey (SF-12) questionnaire, respectively. The SF-12 yields a Mental Component Summary (MCS) score and Physical Component Summary score (PCS). We created a diagram of the hypothesized direct and indirect pathways between cognition and HRQoL, with depressive symptoms as the purported mediator (Fig. 1). We used cross-sectional multivariable linear regression analyses to examine the association between cognitive function and both mental and physical HRQoL, and multivariable mediation analyses to explore the role of depressive symptoms. Results In total, 403 patients were included with a mean age of 76.5 years, with a standard deviation (SD) of 5.8 and a mean eGFR of 14.5 mL/min/1.73 m2 (SD 3.0). A majority of patients were male (71.5%). Cognitive function associated significantly with mental HRQoL (adjusted β 0.30, 95% confidence interval (CI) 0.05; 0.55, p 0.021), but not with physical HRQoL (adjusted β 0.18, 95% CI −0.09; 0.44, p 0.20). The mediation effect of depressive symptoms between cognitive function and MCS remained significant after adjustment (indirect effect 0.15, 95% CI 0.04; 0.26). Thus, lower cognitive function was associated with lower mental HRQoL, which was partly mediated by corresponding increases in depressive symptoms. Conclusion Cognitive function is associated with mental HRQoL, but not with physical HRQoL in older patients with severely reduced GFR and kidney failure. This association is partially mediated by depressive symptoms. These findings underline the importance of screening for cognitive impairment and depressive symptoms in this population and may increase the understanding of what potentially affects HRQoL. As HRQoL is seen as a health priority, further research should explore whether cognitive interventions or treatment of depressive symptoms result in improvement of HRQoL in this population.

Background:Prognostic uncertainty is a recurring theme among patients with chronic kidney disease (CKD). We developed a survey to explore whether CKD patients want to know more about their future, and if so, which topics they prioritize. In addition, we explored differences between several subgroups. Methods:A survey was constructed and tested in collaboration with the Dutch Kidney Patients Association. The survey consisted of three parts: (i) demographics, (ii) considerations about the future, and (iii) prognostic information. The survey was distributed among CKD patients (all stages) through patient associations and via healthcare professionals in two Dutch hospitals. Descriptive statistics were used to summarize the results. All results were stratified by population, sex, and age. Results:A total of 163 patients (45 CKD, 26 dialysis, and 92 kidney transplantation) participated in the survey. The mean age was 63.9 (SD 12.0) and 48.5% was male. Most patients think about their future with CKD occasionally (56.4%) or often (35.0%). Nearly half of the patients (49.7%) discuss the future with their nephrologist, some (19.6%) do not but would like to, and 20 (15.3%) prefer not to. Most patients (73.6%) want more prognostic information, regardless of it being positive or negative. Key topics to receive prognostic information about were laboratory values, symptoms, and physical well-being. Dialysis patients prioritized mental over physical well-being. CKD patients without kidney replacement therapy (KRT) indicated thinking about, and discussing their future more regularly than KRT patients. Conclusions:Patients with CKD contemplate their future regularly and express interest in receiving prognostic information on a variety of topics. One in five patients currently do not discuss their future with CKD with their nephrologist, despite wanting to do so. These findings underline the need to tailor prognostic information provision to patients' preferences, advocating more attention to this subject both in research and clinical practice.

Objective: To identify decision characteristics for which SDM authors deem SDM appropriate or not, and what arguments are used. Methods: 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).Results: 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 imple-menting 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.Conclusion: 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.Practice implications: 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.

BackgroundUnhelpful 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.MethodsIndividual 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.ResultsIllness 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.ConclusionsSeveral 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.