•COVID-19 associated with long-lasting symptoms in patients with advanced kidney disease.•Post COVID-19 condition (PCC) occurs in 24% of patients with advanced kidney disease.•Less likelihood of PCC ...if higher SARS-CoV-2 vaccine induced antibody levels.•More likelihood of PCC if previously hospital admitted during COVID-19.
The burden of post COVID-19 condition (PCC) is not well studied in patients with advanced kidney disease.
A large prospective cohort of SARS-CoV-2 vaccinated patients with chronic kidney disease stages G4–G5 (CKD G4/5), on dialysis, and kidney transplant recipients (KTR) were included. Antibody levels were determined after vaccination. Presence of long-lasting symptoms was assessed in patients with and without prior COVID-19 and compared using logistic regression. In patients with prior COVID-19, PCC was defined according to the WHO definition.
Two hundred sixteen CKD G4/5 patients, 375 dialysis patients, and 2005 KTR were included. Long-lasting symptoms were reported in 204/853 (24%) patients with prior COVID-19 and in 297/1743 (17%) patients without prior COVID-19 (aOR: 1.45 (1.17–1.78), P < 0.001). PCC was prevalent in 29% of CKD G4/5 patients, 21% of dialysis patients, and 24% of KTR. In addition, 69% of patients with PCC reported (very) high symptom burden. Odds of PCC was lower per 10-fold increase in antibody level after vaccination (aOR 0.82 0.70–0.96, P = 0.01) and higher in case of COVID-19 related hospital admission (aOR 4.64 2.61–8.25, P = 0.003).
CKD G4/5 patients, dialysis patients, and KTR are at risk for PCC with high symptom burden after SARS-CoV-2 vaccination, especially if antibody levels are low and in case of hospitalization due to COVID-19.
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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.
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.
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 < 0.001). Patients experienced the DSI as more specific, complete and straightforward compared to the IPOS-Renal.
The DSI was found to be valid and reliable, the most relevant, complete, and comprehensible symptom questionnaire available for routine assessment in patients with advanced CKD. Routine PROMs collection could be of great value to healthcare, both at individual patient and national level. Feedback on scores and involvement of healthcare providers may promote adaptation and implementation in healthcare.
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.
Data were obtained from the RENINE/PROMs registry and included 2978 dialysis patients who completed patient-reported outcome measures between 2018-2020. Itching, sleep problems and psychological symptoms were assessed with the DSI, and HRQOL with the SF-12. 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.
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%CI: -4.12; -2.59 and -3.79 95%CI: -4.56; -3.03). HRQOL remained stable during two years and trajectories did not differ between patients with or without itching. Sleep problems (70% vs 52%) and psychological symptoms (36% vs 19%) were more common in patients with itching. These symptoms had an additional negative effect on HRQOL, but did not interact with itching.
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.
Abstract
Background
Dialysis withdrawal is a common cause of death in dialysis-dependent patients. This study aims to describe dialysis withdrawal practice in The Netherlands, focussing on time ...trends, risk factors and centre variation.
Methods
Data were retrieved from the Dutch registry of kidney replacement therapy patients. All patients who started maintenance dialysis and died in the period 2000–2019 were included. The main outcome was death after dialysis withdrawal; all other causes of death were used for comparison. Time trends were analysed as unadjusted data (proportion per year) and the year of death was included in a multivariable logistic model. Univariable and multivariable analyses were performed to identify factors associated with withdrawal. Centre variation was compared using funnel plots.
Results
A total of 34 692 patients started dialysis and 18 412 patients died while on dialysis. Dialysis withdrawal was an increasingly common cause of death, increasing from 18.3% in 2000–2004 to 26.8% in 2015–2019. Of all patients withdrawing, 26.1% discontinued treatment within their first year. In multivariable analysis, increasing age, female sex, haemodialysis as a treatment modality and year of death were independent factors associated with death after dialysis withdrawal. Centre variation was large (80.7 and 57.4% within 95% control limits of the funnel plots for 2000–2009 and 2010–2019, respectively), even after adjustment for confounding factors.
Conclusions
Treatment withdrawal has become the main cause of death among dialysis-dependent patients in The Netherlands, with large variations between centres. These findings emphasize the need for timely advance care planning and improving the shared decision-making process on choosing dialysis or conservative care.
Patients undergoing dialysis have an impaired health-related quality of life (HRQOL). There are conflicting data from small series on whether patient-related factors such as educational level have an ...impact on experienced HRQOL. The aim of this study was to investigate the association between educational level and HRQOL in dialysis patients.
In a single-center retrospective cross-sectional study HRQOL was measured using the Kidney Disease Quality of Life Short Form-36 (KDQOL-SF36) in prevalent chronic dialysis patients. Educational level was categorized into low, intermediate and high subgroups. Univariate and multivariate regression analyses were performed to assess the effects of age, gender, ethnicity, and dialysis vintage on the association between HRQOL and educational level.
One hundred twenty-nine chronic dialysis patients were included. Patients with an intermediate educational level had significantly higher odds of a higher emotional well-being than patients with a low educational level 4.37 (1.-89-10.13). A similar trend was found for a high educational level (OR 4.13 (1.04-16.42), p = 0.044) The odds for women compared to men were 2.83 (1.32-6.06) for better general health and 2.59 (1.15-5,84) for emotional well-being. There was no interaction between gender and educational level for both subdomains. Each year of increasing age significantly decreased physical functioning (OR 0.94 (0.91-0.97)).
Educational level and sex were associated with emotional well-being, since patients with intermediate and high educational level and females had better emotional well-being in comparison to patients with low educational level and males. Physical functioning decreased with increasing age.
More men than women undergo kidney replacement therapy (KRT) despite a larger number of women being affected by CKD. The aim of this multinational European study was to explore whether there might be ...historic and geographic trends in sex-specific incidence and prevalence of various KRT modalities.
We assessed sex-specific differences in KRT incidence and prevalence using data from nine countries reporting to the European Renal Association-European Dialysis and Transplant Association (ERA-EDTA) Registry for at least 40 years, during the period 1965-2015. Sex distribution data were compared with the European general population (Eurostat). Statistical methodology included basic descriptive statistics, incidence and prevalence calculations per million population (pmp), as well as their male-to-female ratios. Analyses were stratified by age group and diabetic status.
We analyzed data from 230,378 patients receiving KRT (38% women). For all KRT modalities, the incidence and prevalence rates were consistently higher in men than women. For example, the KRT incidence increased from 8 pmp in 1965-1974 to 98 pmp in 2005-2015 in women, whereas it rose from 12 to 173 pmp in men during the same period. Male-to-female ratios, calculated for incident and prevalent KRT patients, increased with age (range 1.2-2.4), showing consistency over decades and for individual countries, despite marked changes in primary kidney disease (diabetes more prevalent than glomerulonephritis in recent decades). The proportion of kidney transplants decreased less with age in incident and prevalent men compared with women on KRT. Stratified analysis of patients who were diabetic versus nondiabetic revealed that the male-to-female ratio was markedly higher for kidney transplantation in patients with diabetes.
Since the beginning of KRT programs reporting to the ERA-EDTA Registry since the 1960s, fewer women than men have received KRT. The relative difference between men and women initiating and undergoing KRT has remained consistent over the last five decades and in all studied countries.
The purpose of our article is to investigate the impact of symptom experience on health related quality of life (HRQOL) in kidney transplant recipients (KTRs) and whether illness perceptions mediated ...this impact. Symptom experience, illness perceptions, and HRQOL were measured at transplantation and 6 weeks after transplantation in KTRs in an ongoing Dutch cohort study. Multivariable linear regression models were used for the analysis. 90 KTRs were analyzed. Fatigue and lack of energy were the most prevalent and burdensome symptoms at transplantation. Mental HRQOL at 6 weeks after transplantation was comparable to that of the general Dutch population (mean standard deviation, SD: 49.9 10.7) versus 50.2 9.2), while physical HRQOL was significantly lower (38.9 9.1 versus 50.6 9.2). Experiencing more symptoms was associated with lower physical and mental HRQOL, and the corresponding HRQOL reduced by -0.15 (95%CI, -0.31; 0.02) and -0.23 (95%CI, -0.42; -0.04) with each additional symptom. The identified mediation effect suggests that worse symptom experiences could cause more unhelpful illness perceptions and consequently lead to lower HRQOL. Illness perceptions may explain the negative impact of symptom experience on HRQOL. Future studies at later stages after kidney transplantation are needed to further explore the mediation effect of illness perceptions and guide clinical practice to improve HRQOL.
Although patients with chronic kidney disease (CKD) are at risk for work disability and loss of employment, not all experience work disruption. We aimed to describe the barriers to and facilitators ...of sustained employment experienced by Dutch patients with CKD.
Qualitative study using semistructured interviews.
27 patients with CKD glomerular filtration rate categories 3b-5 (G3b-G5) from 4 nephrology outpatient clinics in The Netherlands.
Content analyses with constant comparison of interview data based on the International Classification of Functioning, Disability and Health framework.
Participants were 6 patients with CKD G3b-G4, 8 patients receiving maintenance dialysis, and 13 patients with functioning kidney transplants. We identified health-related barriers (symptoms, physical toll of dialysis/transplantation, limited work capacity) and facilitators (few physical symptoms, successful posttransplantation recovery, absence of comorbidities, good physical condition), personal barriers (psychological impact, limited work experience) and facilitators (positive disposition, job satisfaction, work attitude, person-job fit), and environmental barriers and facilitators. Environmental barriers were related to nephrology care (waiting time, use of a hemodialysis catheter) and work context (reorganization, temporary contract, working hours, physical demands); environmental facilitators were related to nephrology care (personalized dialysis, preemptive transplant), work context (large employer, social climate, job requiring mental rather than physical labor, flexible working hours, adjustment of work tasks, reduced hours, remote working, support at work, peritoneal dialysis exchange facility), and support at home. Occupational health services and social security could be barriers or facilitators.
The study sample of Dutch patients may limit the transferability of these findings to other countries.
The wide range of barriers and facilitators in all International Classification of Functioning, Disability and Health components suggests great diversity among patients and their circumstances. These findings underline the importance of personalized nephrology and occupational health care as well as the importance of individually tailored workplace accommodations to promote sustained employment for patients with CKD.
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.
Kidney transplant recipients (KTRs) elicit an impaired immune response after COVID-19 vaccination; however, the exact clinical impact remains unclear. We therefore analyse the relationship between ...antibody levels after vaccination and the risk of COVID-19 in a large cohort of KTRs. All KTRs living in the Netherlands were invited to send a blood sample 28 days after their second COVID-19 vaccination for measurement of their IgG antibodies against the receptor-binding domain of the SARS-CoV-2 spike protein (anti-RBD IgG). Information on COVID-19 was collected from the moment the blood sample was obtained until 6 months thereafter. Multivariable Cox and logistic regression analyses were performed to analyse which factors affected the occurrence and severity (i.e., hospitalization and/or death) of COVID-19. In total, 12,159 KTRs were approached, of whom 2885 were included in the analyses. Among those, 1578 (54.7%) became seropositive (i.e., anti-RBD IgG level >50 BAU/mL). Seropositivity was associated with a lower risk for COVID-19, also after adjusting for multiple confounders, including socio-economic status and adherence to COVID-19 restrictions (HR 0.37 (0.19-0.47),
= 0.005). When studied on a continuous scale, we observed a log-linear relationship between antibody level and the risk for COVID-19 (HR 0.52 (0.31-0.89),
= 0.02). Similar results were found for COVID-19 severity. In conclusion, antibody level after COVID-19 vaccination is associated in a log-linear manner with the occurrence and severity of COVID-19 in KTRs. This implies that if future vaccinations are indicated, the aim should be to reach for as high an antibody level as possible and not only seropositivity to protect this vulnerable patient group from disease.
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