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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.

Background and objectives For older patients with kidney failure, lowering symptom burden may be more important than prolonging life. Dialysis initiation may affect individual kidney failure-related symptoms differently, but the change in symptoms before and after start of dialysis has not been studied. Therefore, we investigated the course of total and individual symptom number and burden before and after starting dialysis in older patients.Design, setting, participants, & measurements The European Quality (EQUAL) study is an ongoing, prospective, multicenter study in patients >= 65 years with an incident eGFR

Background Health-related quality of life (HRQOL) is an increasingly important patient-reported outcome in kidney transplant recipients (KTRs). This study explored relationships between symptom prevalence and burden with HRQOL, and age and gender differences in symptom experience. Methods Eligible Dutch KTRs transplanted in Leiden University Medical Center were invited for this cross-sectional study. HRQOL, and occurrence and burden of 62 symptoms were measured using validated questionnaires. Univariate and multivariate regression analysis were used for investigating the associations of symptom experience with mental and physical HRQOL, and differences in symptom experience between genders and KTRs of diverse age groups. Results A total of 631 KTRs were analyzed; the mean (standard deviation) age was 61.3 (11.3) years, and 62% were male. The median (interquartile range) number of symptoms was 14 (7–22), with a burden of 20 (8–37; range 0–244). Per extra symptom, physical and mental HRQOL decreased [–0.41 (–0.50; –0.31) and –0.51 (–0.59; –0.42), respectively, P 50–65 ≥65 years) feelings of depression and both female and younger KTRs reported higher symptom prevalence concerning changes in physical appearance. Conclusion KRTs’ symptom experience differed depending on gender and age, highlighting the need to develop tailored treatment strategies to reduce symptom experience and subsequently improve HRQOL.

Introduction To understand how individuals (self-)manage obesity, insight is needed into how patients perceive their condition and how this perception translates into health outcomes (e.g., health-related quality of life, HRQOL). Our objectives were (1) to examine illness perceptions in individuals with overweight and obesity, and (2) to investigate associations of these perceptions with physical and mental HRQOL. Methods In a cross-sectional analysis of the Netherlands Epidemiology of Obesity Study (n = 6432; 52% women), illness perceptions were assessed using the Brief Illness Perception Questionnaire, and HRQOL was assessed using the 36-Item Short-Form Health Survey. Illness perceptions were calculated for different categories of overall, abdominal, and metabolically unhealthy obesity. We investigated associations of illness perceptions with HRQOL using BMI-stratified multivariable linear regression analyses. Results Compared to individuals with normal weight, individuals with obesity believed to a higher extent that their condition had more serious consequences [Mean Difference (95%CI): 1.8 (1.6-2.0)], persisted for a longer time [3.4 (3.2-3.6)], manifested in more symptoms [3.8 (3.6-4.0)], caused more worry [4.2 (3.9-4.4)] and emotional distress [2.0 (1.8-2.2)], but was more manageable with medical treatment [3.1 (2.9-3.4)]. They perceived to a lesser extent that they had personal control [-2.2 (-2.4, -2.0)] and understanding [-0.3 (-0.5, -0.1)] regarding their condition. These negative perceptions were less pronounced in individuals with abdominal obesity. Behaviour/Lifestyle was attributed by 73% of participants to be the cause of their obesity. Stronger negative illness perceptions were associated with impaired HRQOL, particularly the physical component. Conclusion Individuals with obesity perceived their conditions as threatening, and this seemed somewhat stronger in individuals with overall obesity than those with abdominal obesity. Behaviour/Lifestyle is a crucial target intervention and empowering self-management behaviour to achieve a healthy body weight may deliver promising results. In addition, strategies that aim to change negative perceptions of obesity into more adaptive ones may improve HRQOL.

Background Reviews of qualitative studies allow for deeper understanding of concepts and findings beyond the single qualitative studies. Concerns on study reporting quality led to the publication of the COREQ-guidelines for qualitative studies in 2007, followed by the ENTREQ-guidelines for qualitative reviews in 2012. The aim of this meta-review is to: 1) investigate the uptake of the COREQ- and ENTREQ- checklists in qualitative reviews; and 2) compare the quality of reporting of the primary qualitative studies included within these reviews prior- and post COREQ-publication. Methods Reviews were searched on 02-Sept-2020 and categorized as (1) COREQ- or (2) ENTREQ-using, (3) using both, or (4) non-COREQ/ENTREQ. Proportions of usage were calculated over time. COREQ-scores of the primary studies included in these reviews were compared prior- and post COREQ-publication using T-test with Bonferroni correction. Results 1.695 qualitative reviews were included (222 COREQ, 369 ENTREQ, 62 both COREQ/ENTREQ and 1.042 non-COREQ/ENTREQ), spanning 12 years (2007–2019) demonstrating an exponential publication rate. The uptake of the ENTREQ in reviews is higher than the COREQ (respectively 28% and 17%), and increases over time. COREQ-scores could be extracted from 139 reviews (including 2.775 appraisals). Reporting quality improved following the COREQ-publication with 13 of the 32 signalling questions showing improvement; the average total score increased from 15.15 to 17.74 (p-value Conclusion The number of qualitative reviews increased exponentially, but the uptake of the COREQ and ENTREQ was modest overall. Primary qualitative studies show a positive trend in reporting quality, which may have been facilitated by the publication of the COREQ.

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.

Background Hospital readmission after transplantation is common in kidney transplant recipients (KTRs). In this study, we aim to compare the risk of 3-month hospital readmission after kidney transplantation with different donor types in the overall population and in both young ( Methods We included all first-time adult KTRs from 2016 to 2018 in the Netherlands Organ Transplant Registry. Multivariable logistic regression models were used to estimate the effect while adjusting for baseline confounders. Results Among 1917 KTRs, 615 (32.1%) had at least one hospital readmission. Living donor kidney transplantation (LDKT) recipients had an adjusted OR of 0.76 (95%CI, 0.61 to 0.96; p = 0.02) for hospital readmission compared to deceased donor kidney transplantation (DDKT) recipients. In the young and elderly, the adjusted ORs were 0.69 (95%CI, 0.52 to 0.90, p = 0.01) and 0.93 (95%CI, 0.62 to 1.39, p = 0.73) and did not differ significantly from each other (p-value for interaction = 0.38). In DDKT, the risk of hospital readmission is similar between recipients with donation after cardiac death (DCD) or brain death (DBD) and the risk was similar between the young and elderly. Conclusion A lower risk of post-transplant 3-month hospital readmission was found in recipients after LDKT compared to DDKT, and this benefit of LDKT might be less dominant in elderly patients. In DDKT, having either DCD or DBD donors is not associated with post-transplant 3-month hospital readmission, regardless of age. Tailored patient management is needed for recipients with DDKT and elderly KTRs.

BACKGROUND AND AIMS In older people with end-stage kidney disease (ESKD), lowering symptom burden is likely more important than solely the prolongation of life. ESKD-related symptoms are multifactorial and dialysis initiation may affect distinct symptoms differently [1]. Symptoms caused by fluid overload (e.g. leg swelling) may be expected to improve, whereas those related to uremic toxins (e.g. itch) may remain. This, since protein-bound uremic toxins are dependent on tubular secretion and thus not sufficiently removed by dialysis treatment [2]. Furthermore, dialysis treatment itself may cause additional symptoms (e.g. fatigue). Therefore, we investigated the evolution of symptom burden and individual symptoms before and after starting dialysis in older ESKD patients. METHOD The European Quality (EQUAL) study is an ongoing prospective multicenter study in late stage 4/5 chronic kidney disease patients aged ≥65 years. Between April 2012 and December 2021, 30 kidney disease-related symptoms were assessed every 3–6 months using the dialysis symptom index (DSI). The sum score for symptom number ranges from 0 to 30 and for symptom severity from 0 to 150, with higher scores indicating a higher burden. We used mixed-effects models to study symptom burden and individual symptoms during the year preceding and following dialysis initiation. RESULTS In total, 456 incident dialysis patients were included. At baseline, dialysis initiation, mean (SD) age was 77 (6) years, eGFR 8 (4) mL/min/1.73 m2 75% were men, 45% had diabetes, 9% smoked and 45% had a history of cardiovascular disease. Mean (SD) number of symptoms was 15 (7) with a symptom severity of 46 (24). During the year preceding dialysis, symptom number increased by +3.4 [95% confidence interval (95% CI): +2.4 to +4.4] and severity by +13.9 (95% CI: +10.1 to +17.6). In the year following dialysis, symptom number decreased by –1.0 (95% CI: −2.1 to + 0.0) and symptom severity by –6.9 (95% CI: −10.8 to −3.0) (Figure 1). At start of dialysis, fatigue, decreased interest in sex and difficulty becoming sexually aroused had the highest prevalence of 81%, 69% and 68%, respectively, and highest burden with a mean severity of 2.7, 2.4 and 2.3, respectively. We observed three separate patterns in prevalence and severity of individual symptoms: (1) increase in the year before dialysis initiation and decrease in the year after (fatigue, trouble staying asleep, leg swelling, decreased appetite, shortness of breath, worrying, trouble falling asleep, difficulty concentrating, feeling irritable, feeling sad, feeling nervous, nausea, feeling anxious, constipation, restless legs and chest pain); (2) increase in the year before dialysis initiation and no change or continued increase in the year after (decreased interest in sex, difficulty becoming sexually aroused, itch, bone or joint pain, dizziness, diarrhea, tingling in feet and vomiting); and (3) no change in the year before or after dialysis initiation (muscle cramps, dry skin, dry mouth, muscle soreness, cough and headache) (Figure 2). CONCLUSION Symptom burden worsened considerably before dialysis initiation, and halted afterwards. Fatigue was the most common and burdensome symptom. Our results may emphasize the importance of discussing kidney-disease related symptoms in routine clinical care and considering their differing patterns of evolution before and after dialysis initiation. Increased physician awareness may lead to better symptom control and has been shown to improve total symptom burden [3].

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.

A funnel plot is a graphical method to evaluate health‐care quality by comparing hospital performances on certain outcomes. So far, in nephrology, this method has been applied to clinical outcomes like mortality and complications. However, patient‐reported outcomes (PROs; eg, health‐related quality of life [HRQOL]) are becoming increasingly important and should be incorporated into this quality assessment. Using funnel plots has several advantages, including clearly visualized precision, detection of volume‐effects, discouragement of ranking hospitals and easy interpretation of results. However, without sufficient knowledge of underlying methods, it is easy to stumble into pitfalls, such as overinterpretation of standardized scores, incorrect direct comparisons of hospitals and assuming a hospital to be in‐control (ie, to perform as expected) based on underpowered comparisons. Furthermore, application of funnel plots to PROs is accompanied by additional challenges related to the multidimensional nature of PROs and difficulties with measuring PROs. Before using funnel plots for PROs, high and consistent response rates, adequate case mix correction and high‐quality PRO measures are required. In this article, we aim to provide insight into the use and interpretation of funnel plots by presenting an overview of the basic principles, pitfalls and considerations when applied to PROs, using examples from Dutch routine dialysis care., SUMMARY AT A GLANCE The statistical review provides insights into the use and interpretation of funnel plots by presenting an overview of the basic principles, pitfalls and considerations when applied to patient‐reported outcomes using examples from Dutch routine dialysis care.

In evidence‐based medicine, clinical research questions may be addressed by different study designs. This article describes when randomized controlled trials (RCT) are needed and when observational studies are more suitable. According to the Centre for Evidence‐Based Medicine, study designs can be divided into analytic and non‐analytic (descriptive) study designs. Analytic studies aim to quantify the association of an intervention (eg, treatment) or a naturally occurring exposure with an outcome. They can be subdivided into experimental (ie, RCT) and observational studies. The RCT is the best study design to evaluate the intended effect of an intervention, because the randomization procedure breaks the link between the allocation of the intervention and patient prognosis. If the randomization of the intervention or exposure is not possible, one needs to depend on observational analytic studies, but these studies usually suffer from bias and confounding. If the study focuses on unintended effects of interventions (ie, effects of an intervention that are not intended or foreseen), observational analytic studies are the most suitable study designs, provided that there is no link between the allocation of the intervention and the unintended effect. Furthermore, non‐analytic studies (ie, descriptive studies) also rely on observational study designs. In summary, RCTs and observational study designs are inherently different, and depending on the study aim, they each have their own strengths and weaknesses., SUMMARY AT A GLANCE In evidence‐based medicine, clinical research questions may be addressed by different study designs. In this article, we explain that randomized controlled trials and observational study designs are inherently different, and depending on the study aim, they each have their own strengths and weaknesses.

Objective Depression and anxiety often coexist in patients with end-stage-kidney disease. Recently, studies showed that a composite ‘general distress score’ which combines depression and anxiety symptoms provides a good fit in dialysis and oncology patients. We aim to investigate if the three most frequently used self-report questionnaires to measure depression and anxiety in dialysis patients are sufficiently unidimensional to warrant the use of such a general distress score in two cohorts of dialysis patients. Methods This study includes two prospective observational cohorts of dialysis patients (total n = 749) which measured depression and anxiety using Beck Depression Inventory (BDI), Beck Anxiety Inventory (BAI) and Hospital Anxiety and Depression Scale (HADS). Confirmatory factor analyses was used to investigate both a strictly unidimensional model and a multidimensional bifactor model that includes a general distress, depression and anxiety factor. The comparative fit index (CFI) and The Root Mean Square Error of Approximation (RMSEA) were used as model fit indices. Results Factor analysis did not show a good fit for a strictly unidimensional general distress factor for both the BDI/BAI and HADS (CFI 0.690 and 0.699, RMSEA 0.079 and 0.125 respectively). The multidimensional model performed better with a moderate fit for the BDI/BAI and HADS (CFI 0.873 and 0.839, RMSEA 0.052 and 0.102). Conclusions This data shows that the BDI/BAI and HADS are insufficiently unidimensional to warrant the use of a general distress score in dialysis patients without also investigating anxiety and depression separately. Future research is needed whether the use of a general distress score might be beneficial to identify patients in need of additional (psychological) support.

Background Depressive symptoms are associated with adverse clinical outcomes in patients with end-stage kidney disease; however, few small studies have examined this association in patients with earlier phases of chronic kidney disease (CKD). We studied associations between baseline depressive symptoms and clinical outcomes in older patients with advanced CKD and examined whether these associations differed depending on sex. Methods CKD patients (≥65 years; estimated glomerular filtration rate ≤20 mL/min/1.73 m2) were included from a European multicentre prospective cohort between 2012 and 2019. Depressive symptoms were measured by the five-item Mental Health Inventory (cut-off ≤70; 0–100 scale). Cox proportional hazard analysis was used to study associations between depressive symptoms and time to dialysis initiation, all-cause mortality and these outcomes combined. A joint model was used to study the association between depressive symptoms and kidney function over time. Analyses were adjusted for potential baseline confounders. Results Overall kidney function decline in 1326 patients was –0.12 mL/min/1.73 m2/month. A total of 515 patients showed depressive symptoms. No significant association was found between depressive symptoms and kidney function over time (P = 0.08). Unlike women, men with depressive symptoms had an increased mortality rate compared with those without symptoms [adjusted hazard ratio 1.41 (95% confidence interval 1.03–1.93)]. Depressive symptoms were not significantly associated with a higher hazard of dialysis initiation, or with the combined outcome (i.e. dialysis initiation and all-cause mortality). Conclusions There was no significant association between depressive symptoms at baseline and decline in kidney function over time in older patients with advanced CKD. Depressive symptoms at baseline were associated with a higher mortality rate in men.

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.

Rationale & Objective Explore priorities related to outcomes and barriers of adults with chronic kidney disease (CKD) regarding person centred care and care planning. Study design Systematic review of qualitative studies. Search Strategy & Sources In July 2018 six bibliographic databases, and reference lists of included articles were searched for qualitative studies that included adults with CKD stages 1–5, not on dialysis or conservative management, without a previous kidney transplantation. Analytical Approach Three independent reviewers extracted and inductively coded data using thematic synthesis. Reporting quality was assessed using the COREQ and the review reported according to PRISMA and ENTREQ statements. Results Forty-six studies involving 1493 participants were eligible. The period after diagnosis of CKD is characterized by feelings of uncertainty, social isolation, financial burden, resentment and fear of the unknown. Patients show interest in ways to return to normality and remain in control of their health in order to avoid further deterioration of kidney function. However, necessary information is often unavailable or incomprehensible. Although patients and healthcare professionals share the predominant interest of whether or not dialysis or transplantation is necessary, patients value many more outcomes that are often unrecognized by their healthcare professionals. We identified 4 themes with 6 subthemes that summarize these findings: ‘pursuing normality and control’ (‘pursuing normality’; ‘a search for knowledge’); ‘prioritizing outcomes’ (‘reaching kidney failure’; ‘experienced health’; ‘social life’; ‘work and economic productivity’); ‘predicting the future’; and ‘realising what matters’. Reporting quality was moderate for most included studies. Limitations Exclusion of non-English articles. Conclusions The realisation that patients’ priorities do not match those of the healthcare professionals, in combination with the prognostic ambiguity, confirms fatalistic perceptions of not being in control when living with CKD. These insights may contribute to greater understanding of patients’ perspectives and a more person-centred approach in healthcare prioritization and care planning within CKD care.

Background and Aims Differences between the sexes are apparent in the epidemiology of CKD. Cross-sectional studies show that women consistently report a poorer health-related quality of life (QoL) than men, however, longitudinal studies are lacking. Here we investigate the sex-specific evolution of QoL over time in advanced CKD. As a secondary aim, we explore the sex-specific determinants of QoL. Method EQUAL is an observational prospective cohort study in stages 4 and 5 CKD patients ≥65 years not on dialysis with an incident estimated glomerular filtration rate (eGFR) < 20 ml/min/1.73m². Data on QoL (measured using the RAND-36), clinical and demographic patient characteristics were collected between April 2012 and September 2020. QoL trajectories were modelled by sex using linear mixed models, and joint models were applied to deal with informative censoring. We followed patients until death or dialysis initiation. Results We included 5151 QoL measurements in 1416 patients over a total of 1986 person years of follow-up. Overall, the physical component summary (PCS) declined with 2.0 (95% CI 1.4-2.6) points and the mental component summary (MCS) by 2.4 (95% CI 1.8-3.0) points per year. Although women had overall lower QoL scores, figure 1 demonstrates that PCS and MCS declined more than twice as fast in men (PCS: 2.4 per year, 95% CI 1.7 – 3.1, MCS: 2.9 per year, 95% CI 2.2 – 3.6) compared with women (PCS: 1.1 per year, 95% CI -0.2 – 2.0, MCS: 1.5 per year, 95% CI 0.5 – 2.4). We identified a non-linear interaction effect between sex and eGFR levels on QoL, demonstrating a stronger negative effect of decreased eGFR on both PCS (p=0.02) and MCS (p=0.04) in men compared with women. Subsequent adjustment for renal decline attenuated the difference in rate of QoL decline between men and women (difference after adjustment; PCS: 1.1, 95% CI -0.1 – 2.2, MCS: 1.2, 95% 0.0 – 2.3). In univariable analyses, higher serum haemoglobin was more beneficial to QoL in men compared to women (p-value for interaction; PCS: p=0.03, MCS: p=0.01). Higher serum phosphate had a strong harmful effect on both PCS and MCS in men, but not in women (PCS & MCS: p Conclusion Despite the higher overall QoL reported by men, both their physical and mental QoL declined approximately twice as fast compared with women. The faster decline in men was mediated in part by their lower levels of renal function, which had a stronger impact on their QoL as compared with women. Furthermore, in exploratory analyses we identified that high levels of phosphate, low levels of haemoglobin, and pre-existing diabetes were more detrimental to QoL in men than in women.

Background and Aims The number of older (≥65y) people with ESKD starting chronic dialysis increased substantially the past decade because of ageing of the population due to improved health care. In addition, older age is no longer a contraindication for dialysis. Finally, older individuals are more often ineligible for kidney transplantation. Many older people with stage 5 CKD non-dialysis have a low health-related quality of life (HRQOL) and high symptom burden. In this group, improving HRQOL and lowering symptom burden may be deemed more important than solely the prolongation of life. Little is known about the effect of dialysis treatment on HRQOL and symptom burden. Therefore, we investigated the evolution of HRQOL and symptoms before and after the start of dialysis in older ESKD patients. Method The European Quality (EQUAL) study is an ongoing European prospective multi-center follow-up study in late stage 4/5 CKD patients aged ≥65 years. For the present analyses, we included all patients who started dialysis. HRQOL was assessed every 3-6 months using the RAND-36 questionnaire, resulting in a physical component summary (PCS) and a mental component summary (MCS) score. Component scores ranged from 0-100 with higher scores indicating a better HRQOL. Kidney disease-related symptom burden was assessed every 3-6 months using the dialysis symptom index (DSI). The sum score for symptom number ranged from 0 to 30 and for symptom severity from 0 to 150, with higher scores indicating a higher symptom burden. We used linear mixed models (LMM) to explore the evolution of mental and physical HRQOL, symptom number and symptom severity during the year preceding and following dialysis initiation. Results In total, 571 older dialysis patients were included. At baseline (dialysis initiation), mean (SD) age was 76 (6) years, 74% were men, 47% had diabetes, 9% were current smokers, 34% had cardiovascular disease and the mean (SD) residual kidney function was 8.6 (4.4) ml/min/1.73m2. Mean (SD) MSC was 55 (23), PSC was 43 (21), and the number of symptoms was 15 (7) with a symptom severity of 88 (18). Overall, LMM showed that in the year preceding dialysis MCS decreased by 15.7 (95% CI: 11.9 to 19.5), PCS decreased by 12.0 (8.2 to 15.7), symptom number increased by 3.5 (2.5 to 4.6) and symptom severity increased by 5.3 (1.8 to 8.8). In the year following dialysis, MCS increased by 1.9 (-2.7 to 6.5), PCS decreased by 2.1 (-6.9 to 2.8), symptom number decreased by 0.9 (-0.3 to 2.1) and symptom severity decreased by 7.6 (2.8 to 12.4). Conclusion Both mental and physical HRQOL, as well as symptom number and severity, worsened considerably during the year preceding dialysis, but stabilized after dialysis initiation. These results could aid nephrologists in informing older ESKD patients who consider starting dialysis and improve the shared decision making process.

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 Initiation of renal replacement therapy often results from a combination of kidney function deterioration and symptoms related to chronic kidney disease (CKD) progression. We investigated the association between kidney function decline and symptom development in patients with advanced CKD. Methods In the European Quality study on treatment in advanced CKD (EQUAL study), a European prospective cohort study, patients with advanced CKD aged ≥65 years and a kidney function that dropped Results At least one kidney function estimate with symptom number or overall symptom severity was available for 1109 and 1019 patients, respectively. The mean (95% confidence interval) annual kidney function decline was 1.70 (1.32; 2.08) mL/min/1.73 m2. The mean overall increase in symptom number and severity was 0.73 (0.28; 1.19) and 2.93 (1.34; 4.52) per year, respectively. A cross-sectional association between the level of kidney function and symptoms was lacking. Furthermore, kidney function at cohort entry was not associated with symptom development. However, each mL/min/1.73 m2 of annual kidney function decline was associated with an extra annual increase of 0.23 (0.07; 0.39) in the number of symptoms and 0.87 (0.35; 1.40) in overall symptom severity. Conclusions A faster kidney function decline was associated with a steeper increase in both symptom number and severity. Considering the modest association, our results seem to suggest that repeated thorough assessment of symptom development during outpatient clinic visits, in addition to the monitoring of kidney function decline, is important for clinical decision-making.

Background The patient perspective on the use of screening for high risks of adverse health outcomes in Emergency Department (ED) care is underexposed, although it is an important perspective influencing implementation in routine care. This study explores the experiences with, and attitudes towards geriatric screening in routine ED care among older people who visited the ED. Methods This was a qualitative study using individual face-to-face semi-structured interviews. Interviews were conducted in older patients (≥70 years) who completed the ‘Acutely Presenting Older Patient’ screener while visiting the ED of a Dutch academic hospital. Purposive convenience sampling was used to select a heterogeneous sample of participants regarding age, disease severity and the result from screening. Transcripts were analyzed inductively using thematic analysis. Results After 13 interviews (7 women, median age 82 years), data saturation was reached. The participants had noticed little of the screening administration during triage and screening was considered as a normal part of ED care. Most participants believed that geriatric screening contributes to assessing older patients holistically, recognizing geriatric problems early and comforting patients with communication and attention. None of the participants had a negative attitude towards screening or thought that screening is discrimination on age. Care providers should communicate respectfully with frail older patients and involve them in decision-making. Conclusions Older patients experienced geriatric screening as a normal part of ED care and had predominantly positive attitudes towards its use in the ED. This qualitative study advocates for continuing the implementation of geriatric screening in routine ED practice.

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: Hospital readmission after transplantation is common in kidney transplant recipients (KTRs). In this study, we aim to investigate the effect of donor type on post-transplant 3-month hospital readmission in the overall population and in both young (Methods: We included all first-time adult KTRs from 2016 to 2018 in the Netherlands Organ Transplant Registry. Multivariable logistic regression models were used to estimate the effect while adjusting for baseline confounders.Results: Among 1917 KTRs, 615 (32.1%) had at least one hospital readmission. Living donor kidney transplantation (LDKT) recipients had an adjusted OR of 0.76 (95%CI, 0.61 to 0.96; p=0.02) for hospital readmission compared to deceased donor kidney transplantation (DDKT) recipients. In the young and elderly, the adjusted ORs were 0.69 (95%CI, 0.52 to 0.90, p=0.00) and 0.93 (95%CI, 0.62 to 1.39, p=0.45) and did not differ significantly from each other (p-value for interaction = 0.38). In DDKT, the risk of hospital readmission is similar between recipients with donation after cardiac death (DCD) or brain death (DBD) and the risk was similar between the young and elderly.Conclusion: A lower risk of post-transplant 3-month hospital readmission was found in recipients after LDKT compared to DDKT, and this benefit of LDKT might be less dominant in elderly patients. In DDKT, having either DCD or DBD donors is not associated with post-transplant 3-month hospital readmission, regardless of age. More sophisticated care is needed for recipients with DDKT and elderly KTRs.

BackgroundOlder patients with end-stage kidney disease (ESKD) often live with unidentified frailty and multimorbidity. Despite guideline recommendations, geriatric assessment is not part of standard clinical care, resulting in a missed opportunity to enhance (clinical) outcomes including quality of life in these patients. To develop routine geriatric assessment programs for patients approaching ESKD, it is crucial to understand patients’ and professionals’ experiences with and perspectives about the benefits, facilitators and barriers for geriatric assessment.MethodsIn this qualitative study, semi-structured focus group discussions were conducted with ESKD patients, caregivers and professionals. Participants were purposively sampled from three Dutch hospital-based study- and routine care initiatives involving geriatric assessment for (pre-)ESKD care. Transcripts were analysed inductively using thematic analysis.ResultsIn six focus-groups, participants (n = 47) demonstrated four major themes:(1) Perceived characteristics of the older (pre)ESKD patient group. Patients and professionals recognized increased vulnerability and (cognitive) comorbidity, which is often unrelated to calendar age. Both believed that often patients are in need of additional support in various geriatric domains.(2) Experiences with geriatric assessment.Patients regarded the content and the time spent on the geriatric assessment predominantly positive. Professionals emphasized that assessment creates awareness among the whole treatment team for cognitive and social problems, shifting the focus from mainly somatic to multidimensional problems. Outcomes of geriatric assessment were observed to enhance a dialogue on suitability of treatment options, (re)adjust treatment and provide/seek additional (social) support.(3) Barriers and facilitators for implementation of geriatric assessment in routine care.Discussed barriers included lack of communication about goals and interpretation of geriatric assessment, burden for patients, illiteracy, and organizational aspects. Major facilitators are good multidisciplinary cooperation, involvement of geriatrics and multidisciplinary team meetings.(4) Desired characteristics of a suitable geriatric assessmentconcerned the scope and use of tests and timing of assessment.ConclusionsPatients and professionals were positive about using geriatric assessment in routine nephrology care. Implementation seems achievable, once barriers are overcome and facilitators are endorsed. Geriatric assessment in routine care appears promising to improve (clinical) outcomes in patients approaching ESKD.

Background and Aims Funnel plots are used to evaluate healthcare quality by comparing hospital performances on certain outcomes. So far, in nephrology, only clinical outcomes like mortality and complications are used for this purpose. However, with the increasing importance of patient-reported outcomes (PROs; e.g. health related quality of life [HRQOL]), PROs should also be taken into account in this quality assessment. Understanding the underlying methods and challenges is needed for optimal use of PROs in this context. Therefore, we aim to provide insight into the use and interpretation of funnel plots by presenting an overview of the basic principles and considerations when applied to PROs, using examples from Dutch routine dialysis care. Method Data on PROs (HRQOL and symptom burden), sociodemographic and clinical characteristics of patients receiving dialysis were obtained from the Dutch renal registry and were used to illustrate and explain the different components of a funnel plot, the underlying concepts (e.g. case mix and indirect standardization) and the interpretation of funnel plots. Additionally, some methodological issues are highlighted that should be considered when these methods are applied to PROs. Results A funnel plot is a graphical aid that consists of four components: an indicator, reference standard, measure of precision (usually the sample size) and control limits (see Figure). Funnel plots provide insight into hospitals’ performances by comparing the observed outcome to the expected outcome. A hospital’s expected outcome is calculated using the scores in the reference population (given the hospital’s patient population, i.e. case mix) and represents the outcome that would have been observed if the hospital had performed equal to the reference standard. Hospitals may be considered as under- or overperforming when exceeding the upper or lower 95% control limit. Advantages of funnel plots include: clearly visualized precision, detection of volume-effects, discouragement of ranking hospitals and easy interpretation of results. However, without basic knowledge of underlying methods, it is easy to fall into pitfalls, including: overinterpretation of standardized scores, incorrect direct comparisons of hospitals and to assume a hospital to be in-control based on under-powered comparisons. Furthermore, application to PROs is accompanied with additional challenges such as the multidimensional nature of PROs (e.g. HRQOL) which makes adequate case mix correction more difficult, and difficulties with measuring PROs, for instance to achieve high response rates or the dependence on good psychometric properties of the PRO-measures. Conclusion PROs partly determine the value of nephrological care and should therefore be considered in healthcare quality assessment. Understanding of the underlying methods using funnel plots is necessary for optimal use and correct interpretation of hospital comparisons on PROs. Some challenges need to be addressed before these methods can be applied to PROs, namely: high and consistent response rates, adequate case mix correction and high-quality PRO measures.

Rationale & Objective: Patients with chronic kidney disease (CKD) are particularly sensitive to dietary sodium. We evaluated a self-management approach for dietary sodium restriction in patients with CKD. Study Design: Randomized controlled trial. Setting & Participants: Nephrology outpatient clinics in 4 Dutch hospitals. 99 adults with CKD stages 1 to 4 or a functioning (estimated glomerular filtration rate ≥ 25 mL/min/1.73 m2) kidney transplant, hypertension, and sodium intake >130 mmol/d. Intervention: Routine care was compared with routine care plus a web-based self-management intervention including individual e-coaching and group meetings implemented over a 3-month intervention period, followed by e-coaching over a 6-month maintenance period. Outcomes: Primary outcomes were sodium excretion after the 3-month intervention and after the 6-month maintenance period. Secondary outcomes were blood pressure, proteinuria, costs, quality of life, self-management skills, and barriers and facilitators for implementation. Results: Baseline estimated glomerular filtration rate was 55.0 ± 22.0 mL/min/1.73 m2. During the intervention period, sodium excretion decreased in the intervention group from 188 ± 8 (SE) to 148 ± 8 mmol/d (P < 0.001), but did not change significantly in the control group. At 3 months, mean sodium excretion was 24.8 (95% CI, 0.1-49.6) mmol/d lower in the intervention group (P = 0.049). At 3 months, systolic blood pressure (SBP) decreased in the intervention group from 140 ± 3 to 132 ± 3 mm Hg (P < 0.001), but was unchanged in the control group. Mean difference in SBP across groups was −4.7 (95% CI, −10.7 to 1.3) mm Hg (P = 0.1). During the maintenance phase, sodium excretion increased in the intervention group, but remained lower than at baseline at 160 ± 8 mmol/d (P = 0.01), while it decreased in the control group from 174 ± 9 at the end of the intervention period to 154 ± 9 mmol/d (P = 0.001). Consequently, no difference in sodium excretion between groups was observed after the maintenance phase. There was no difference in SBP between groups after the maintenance phase. Limitations: Limited power, postrandomization loss to follow-up, Hawthorne effect, lack of dietary data, short-term follow-up. Conclusions: A coaching intervention reduced sodium intake at 3 months. Efficacy during the maintenance phase was diminished, possibly due to inadvertent adoption of the intervention by the control group. Funding: Grant funding from the Netherlands Organization for Health Research and Development and the Dutch Kidney Foundation. Trial registration: Registered at ClinicalTrials.gov with study number NCT02132013.

Purpose: The purposes of this study were to assess the importance of perceived sodium reduction barriers among patients with chronic kidney disease (CKD) and identify associated sociodemographic, clinical, and psychosocial factors. Method: A total of 156 patients with CKD completed a questionnaire assessing sodium reduction barriers (18 self-formulated items), depressive symptoms (Beck Depression Inventory), perceived autonomy support (Modified Health Care Climate Questionnaire), and self-efficacy (Partners in Health Questionnaire). Factor analysis was used to identify barrier domains. Correlation coefficients were computed to examine relationships between barrier domains and patient characteristics. Results: Nine barrier domains were identified. Barriers perceived as important were as follows: high sodium content in products, lack of sodium feedback, lack of goal setting and discussing strategies for sodium reduction, and not experiencing CKD-related symptoms (mean scores > 3.0 on 5-point scales, ranging from 1 ‘no barrier’ to 5 ‘very important barrier’). Other barriers (knowledge, attitude, coping skills when eating out, and professional support) were rated as moderately important (rated around midpoint), and the barrier ‘intrinsic motivation’ was rated as somewhat important (mean score = 1.9). Sodium reduction barrier domains were not associated with gender and kidney function, but were associated with age, level of education, number of comorbidities, perceived autonomy support, depressive symptoms, and self-efficacy (range r = 0.17–0.35). Patients with lower self-efficacy and perceived autonomy support scores experienced most sodium reduction barriers. Conclusion: Patients with CKD experience multiple important sodium reduction barriers and could benefit from support strategies that target various sodium reduction barriers and strengthen beliefs regarding self-efficacy and autonomy support. Additionally, environmental interventions should be implemented to reduce sodium levels in processed foods.

Background Patient-reported outcome measures (PROMs) are becoming increasingly important in healthcare. In nephrology, there is no agreement on which chronic kidney disease (CKD) symptom questionnaire to use. Therefore, the aim of this study is to select a valid symptom questionnaire for routine assessment in patients with advanced CKD. Methods A four-phase mixed methods approach, using qualitative and quantitative research methods, was applied. First, a systematic literature search was conducted to retrieve existing symptom questionnaires. Second, a symptom list was created including all symptoms in existing questionnaires and symptoms mentioned in interviews with patients with CKD, from which symptom clusters were identified. Next, questionnaires were selected based on predefined criteria regarding content validity. Last, two online feedback panels of patients with CKD (n = 151) and experts (n = 6) reviewed the most promising questionnaires. Results The literature search identified 121 questionnaires, of which 28 were potentially suitable for symptom assessment in patients with advanced CKD. 101 unique symptoms and 10 symptom clusters were distinguished. Based on predefined criteria, the Dialysis Symptom Index (DSI) and Palliative Care Outcome Scale-Renal Version (IPOS-Renal) were selected and reviewed by feedback panels. Patients needed 5.4 and 7.5 min to complete the DSI and IPOS-Renal, respectively (p

Objectives Illness perceptions in patients with end-stage renal disease are associated with nonadherence and increased mortality. However, no data are available regarding the relationship between illness perceptions and accelerated disease progression in predialysis patients. Methods A total of 416 incident predialysis patients participating in a prospective cohort (PREPARE-2, Predialysis Patient Record-2) completed the Revised Illness Perception Questionnaire at the start of specialized predialysis care. The association between illness perceptions and time until start of dialysis was investigated using Cox regression models. Linear mixed modeling was used to test associations between illness perceptions and change of kidney function during predialysis care. Adjustments were made for sociodemographic, clinical, and biochemical factors. Results Five illness perceptions were associated with disease progression. Dialysis started earlier and kidney function declined faster (ml/min per 1.73 m/y) in patients who perceived their kidney disease as being cyclical in nature (adjusted hazard ratio [HRadj] = 1.32 [95% confidence interval {CI} = 1.11-1.56]; adjusted additional change = -0.64 [95% CI = -1.16 to -0.13]), having many negative consequences (HRadj = 1.47 [95% CI = 1.18-1.85]; adjusted additional change = -0.67 [-1.30 to -0.04]) and causing negative feelings (HRadj = 1.21 [95% CI = 1.03-1.42]; adjusted additional change = -0.65 [95% CI = -1.13 to -0.16]). In addition, kidney function declined faster in patients who perceived that their kidney disease cannot be personally controlled (adjusted additional change = -0.69 [95% CI = -1.31 to -0.09]) and who perceived that they did not fully understand their kidney disease (adjusted additional change = -0.53 [-1.05 to -0.01]). Conclusions Stronger negative perceptions of illness at the start of predialysis care are a marker for accelerated disease progression. Detecting illness perceptions in predialysis patients may provide opportunities to intervene and slow down disease progression.

Objective: To identify health-related quality of life (HRQOL) trajectories during 18 months of predialysis care and associated patient characteristics and illness perceptions. Method: 396 incident predialysis patients participating in the prospective PREdialysis PAtient REcord-2 study completed every 6 months the 36-item Short Form Health Survey (i.e., mental and physical HRQOL) and Revised Illness Perception Questionnaire. HRQOL trajectories were examined using latent class growth models, and associated baseline factors were identified using logistic regression. Analyses for illness perceptions were adjusted for demographic and clinical characteristics. Results: Three physical HRQOL trajectories (low-stable [34.1% of the sample], medium-declining [32.5%], and high-increasing [33.4%]) and two mental HRQOL trajectories (low-stable [38.7%] and high-stable [61.3%]) were identified. Increased odds for a low-stable physical HRQOL trajectory were detected in older patients (Odds ratio [OR] = 1.04), patients with cardiovascular disease (OR = 2.1) and patients who believed to a lesser extent they can personally control their disease (ORadj = 0.88). Increased odds for both a low-stable physical and mental HRQOL trajectory were detected in patients who believed to a higher extent that their disease is cyclical, has negative consequences, causes negative feelings, and in patients who believed to a lesser extent they understand their disease (ORadj ranged between 0.84 and 1.36). Additionally, patients who attributed more symptoms to their disease had increased odds for a medium-declining (ORadj = 1.21) and low-stable physical HRQOL trajectory (ORadj = 1.50). Conclusions: Older age and cardiovascular disease are markers for unfavorable physical HRQOL trajectories, and stronger negative illness perceptions are markers for unfavorable physical and mental HRQOL trajectories. Targeting negative illness perceptions could possibly optimize HRQOL during predialysis care. (PsycINFO Database Record

Background: To evaluate the effectiveness and sustainability of self-managed sodium restriction in patients with chronic kidney disease.Study Design: Open randomized controlled trial.Setting & Participants: Patients with moderately decreased kidney function from 4 hospitals in the Netherlands.Intervention: Regular care was compared with regular care plus an intervention comprising education, motivational interviewing, coaching, and self-monitoring of blood pressure (BP) and sodium.Outcomes: Primary outcomes were sodium excretion and BP after the 3-month intervention and at 6-month follow-up. Secondary outcomes were protein excretion, kidney function, antihypertensive medication, self-efficacy, and health-related quality of life (HRQoL).Results: At baseline, mean sodium excretion rate was 163.6 +/- 64.9 (SD) mmol/24 h; mean estimated glomerular filtration rate was 49.7 +/- 25.6 mL/min/1.73 m(2); median protein excretion rate was 0.8 (IQR, 0.4-1.7) g/24 h; and mean 24-hour ambulatory systolic and diastolic BPs were 129 +/- 15 and 76 +/- 9 mm Hg, respectively. Compared to regular care only (n = 71), at 3 months, the intervention group (n = 67) showed reduced sodium excretion rate (mean change, -30.3 [95% CI, -54.7 to -5.9] mmol/24 h), daytime ambulatory diastolic BP (mean change, -3.4 [95% CI, -6.3 to -0.6] mm Hg), diastolic office BP (mean change, -5.2 [95% CI, -8.4 to -2.1] mm Hg), protein excretion (mean change, -0.4 [95% CI, -0.7 to -0.1] g/24h), and improved self-efficacy (mean change, 0.5 [95% CI, 0.1 to 0.9]). At 6 months, differences in sodium excretion rates and ambulatory BPs between the groups were not significant, but differences were detected in systolic and diastolic office BPs (mean changes of -7.3 [95% CI, -12.7 to -1.9] and -3.8 [95% CI, -6.9 to -0.6] mm Hg, respectively), protein excretion (mean changes, -0.3 [95% CI, -0.6 to -0.1] g/24h), and self-efficacy (mean change, 0.5 [95% CI, 0.0 to 0.9]). No differences in kidney function, medication, and HRQoL were observed.Limitations: Nonblinding, relatively low response rate, and missing data.Conclusions: Compared to regular care only, this self-management intervention modestly improved outcomes, although effects on sodium excretion and ambulatory BP diminish over time. (C) 2016 by the National Kidney Foundation, Inc.

Reducing sodium intake can prevent cardiovascular complications and further decline of kidney function in patients with chronic kidney disease. However, the vast majority of patients fail to reach an adequate sodium intake, and little is known about why they do not succeed.This study aims to identify perceived barriers and support strategies for reducing sodium intake among both patients with chronic kidney disease and health-care professionals.A purposive sample of 25 patients and 23 health-care professionals from 4 Dutch medical centers attended 8 focus groups. Transcripts were analyzed thematically and afterwards organized according to the phases of behavior change of self-regulation theory.Multiple themes emerged across different phases of behavior change, including the patients' lack of practical knowledge and intrinsic motivation, the maladaptive illness perceptions and refusal skills, the lack of social support and feedback regarding disease progression and sodium intake, and the availability of low-sodium foods.The results indicate the need for the implementation of support strategies that target specific needs of patients across the whole process of changing and maintaining a low-sodium diet. Special attention should be paid to supporting patients to set sodium-related goals, strengthening intrinsic motivation, providing comprehensive and practical information (e.g., about hidden salt in products), increasing social support, stimulating the self-monitoring of sodium intake and disease progression, and building a supportive patient-professional relationship that encompasses shared decision making and coaching. Moreover, global programs should be implemented to reduce sodium levels in processed foods, introduce sodium-related product labels, and increase consumer awareness.