"What matters to you?": The relevance of patient priorities in dialysis care for assessment and clinical practice.

BACKGROUND: Dialysis patients are confronted with numerous, complex problems, which make it difficult to identify individual patient's most prominent problems. The objectives of this study were to (1) identify dialysis patients' most prominent problems from a patient perspective and (2) to calculate disease-specific norms for questionnaires measuring these problems. METHODS: One hundred seventy-five patients treated with hemodialysis or peritoneal dialysis completed a priority list on several domains of functioning (e.g., physical health, mental health, social functioning, and daily activities) and a set of matching questionnaires assessing patient functioning on these domains. Patient priorities were assessed by calculating the importance ranking of each domain on the priority list. Subsequently, disease-specific norm scores were calculated for all questionnaires, both for the overall sample and stratified by patient characteristics. RESULTS: Fatigue was listed as patients' most prominent problem. Priorities differed between male and female patients, younger and older patients, and home and center dialysis patients, which was also reflected in their scores on the corresponding domains of functioning. Therefore, next to general norm scores, we calculated corrections to the general norms to take account of patient characteristics (i.e., sex, age, and dialysis type). CONCLUSIONS: Results highlight the importance of having attention for the specific priorities and needs of each individual patient. Adequate disease-specific, norm-based assessment is not only necessary for diagnostic procedures but is an essential element of patient-centered care: It will help to better understand and respect individual patient needs and tailor treatment accordingly.

A nationwide Dutch cohort study shows relatively good pregnancy outcomes after kidney transplantation and finds risk factors for adverse outcomes.

Although numbers of pregnancy after kidney transplantation (KT) are rising, high risks of adverse pregnancy outcomes (APO) remain. Though important for pre-conception counselling and pregnancy monitoring, analyses of pregnancy outcomes after KT per pre-pregnancy estimated glomerular filtration rate-chronic kidney disease (eGFR-CKD)-categories have not been performed on a large scale before. To do this, we conducted a Dutch nationwide cohort study of consecutive singleton pregnancies over 20 weeks of gestation after KT. Outcomes were analyzed per pre-pregnancy eGFR-CKD category and a composite APO (cAPO) was established including birth weight under 2500 gram, preterm birth under 37 weeks, third trimester severe hypertension (systolic blood pressure over 160 and/or diastolic blood pressure over 110 mm Hg) and/or over 15% increase in serum creatinine during pregnancy. Risk factors for cAPO were analyzed in a multilevel model after multiple imputation of missing predictor values. In total, 288 pregnancies in 192 women were included. Total live birth was 93%, mean gestational age 35.6 weeks and mean birth weight 2383 gram. Independent risk factors for cAPO were pre-pregnancy eGFR, midterm percentage serum creatinine dip and midterm mean arterial pressure dip; odds ratio 0.98 (95% confidence interval 0.96-0.99), 0.95 (0.93-0.98) and 0.94 (0.90-0.98), respectively. The cAPO was a risk indicator for graft loss (hazard ratio 2.55, 1.09-5.96) but no significant risk factor on its own when considering pre-pregnancy eGFR (2.18, 0.92-5.13). This was the largest and most comprehensive study of pregnancy outcomes after KT, including pregnancies in women with poor kidney function, to facilitate individualized pre-pregnancy counselling based on pre-pregnancy graft function. Overall obstetric outcomes are good. The risk of adverse outcomes is mainly dependent on pre-pregnancy graft function and hemodynamic adaptation to pregnancy.

E-HEalth treatment in Long-term Dialysis (E-HELD): study protocol for a multicenter randomized controlled trial evaluating personalized Internet-based cognitive-behavioral therapy in dialysis patients.

BACKGROUND: Kidney failure and dialysis treatment have a large impact on a patient's life. Patients experience numerous, complex symptoms and usually have multiple comorbid conditions. Despite the multitude of problems, patients often have priorities for improvement of specific aspects of their functioning, which would be helpful for clinicians to become informed of. This highlights a clear need for patient-centered care in this particular patient group, with routine screening as a vital element to timely recognize symptoms and tailored treatment to match individual patients' needs and priorities. By also providing feedback on patient's screening results to the patient itself, the patient is empowered to actively take control in one's mostly uncontrollable disease process. The current paper describes the study design of a multicenter randomized controlled trial evaluating the effectiveness of the "E-HEealth treatment in Long-term Dialysis" (E-HELD) intervention. This therapist-guided Internet-based cognitive-behavioral therapy (ICBT) intervention is focused on and personalized to the myriad of problems that dialysis patients experience and prioritize. METHODS: After a screening procedure on adjustment problems, 130 eligible dialysis patients will be randomized to care as usual or the E-HELD intervention. Patients will complete questionnaires on distress (primary outcome measure), several domains of functioning (e.g., physical, psychological, social), potential predictors and mediators of treatment success, and the cost-effectiveness of the intervention, at baseline, 6-month follow-up, and 12-month follow-up. In addition, to take account of the personalized character of the intervention, the Personalized Priority and Progress Questionnaire (PPPQ) will be administered which is a personalized instrument to identify, prioritize, and monitor individual problems over time. DISCUSSION: The present study design will provide insight in the effectiveness of tailored ICBT in patients with kidney failure who are treated with dialysis. When proven effective, the screening procedure and the subsequent ICBT intervention could be implemented in routine care to detect, support, and treat patients struggling with adjustment problems. TRIAL REGISTRATION: NL63422.058.17 [Registry ID: METC-LDD] NL7160 [Netherlands Trial Register; registered on 16 July 2018].

Maternal, Decidual, and Neonatal Lymphocyte Composition Is Affected in Pregnant Kidney Transplant Recipients.

Pregnancy after renal transplantation is associated with an increased risk of complications. While a delicately balanced uterine immune system is essential for a successful pregnancy, little is known about the uterine immune environment of pregnant kidney transplant recipients. Moreover, children born to kidney transplant recipients are exposed in utero to immunosuppressive drugs, with possible consequences for neonatal outcomes. Here, we defined the effects of kidney transplantation on the immune cell composition during pregnancy with a cohort of kidney transplant recipients as well as healthy controls with uncomplicated pregnancies. Maternal immune cells from peripheral blood were collected during pregnancy as well as from decidua and cord blood obtained after delivery. Multiparameter flow cytometry was used to identify and characterize populations of cells. While systemic immune cell frequencies were altered in kidney transplant patients, immune cell dynamics over the course of pregnancy were largely similar to healthy women. In the decidua of women with a kidney transplant, we observed a decreased frequency of HLA-DR+ Treg, particularly in those treated with tacrolimus versus those that were treated with azathioprine next to tacrolimus, or with azathioprine alone. In addition, both the innate and adaptive neonatal immune system of children born to kidney transplant recipients was significantly altered compared to neonates born from uncomplicated pregnancies. Overall, our findings indicate a significant and distinct impact on the maternal systemic, uterine, and neonatal immune cell composition in pregnant kidney transplant recipients, which could have important consequences for the incidence of pregnancy complications, treatment decisions, and the offspring's health.

Comparison of pregnancy outcomes in Dutch kidney recipients with and without calcineurin inhibitor exposure: a retrospective study.

Within pregnancies occurring between 1986 and 2017 in Dutch kidney transplant recipients (KTR), we retrospectively compared short-term maternal and foetal outcomes between patients on calcineurin inhibitor (CNI) based (CNI+) and CNI-free immunosuppression (CNI-). We identified 129 CNI+ and 125 CNI- pregnancies in 177 KTR. Demographics differed with CNI+ having higher body mass index (P = 0.045), shorter transplant-pregnancy interval (P < 0.01), later year of transplantation and -pregnancy (P < 0.01). Serum creatinine levels were numerically higher in CNI+ in all study phases, but only reached statistical significance in third trimester (127 vs. 105 µm; P < 0.01), where the percentual changes from preconceptional level also differed (+3.1% vs. -2.2% in CNI-; P = 0.05). Postpartum both groups showed 11-12% serum creatinine rise from preconceptional level. Incidence of low birth weight (LBW) tended to be higher in CNI+ (52% vs. 46%; P = 0.07). Both groups showed equal high rates of preterm delivery. Using CNIs during pregnancy lead to a rise in creatinine in the third trimester but does not negatively influence the course of graft function in the first year postpartum or direct foetal outcomes. High rates of preterm delivery and LBW in KTR, irrespective of CNI use, classify all pregnancies as high risk.

Predicting health-related quality of life in dialysis patients: Factors related to negative outcome expectancies and social support.

OBJECTIVES: Dialysis patients report a low health-related quality of life (HRQOL) due to high disease burden and far-reaching consequences of dialysis treatment. This study examined several cognitive-behavioral and social factors, with a focus on negative outcome expectancies, that might be relevant for HRQOL in end-stage kidney disease (ESKD) patients treated with dialysis. METHODS: Patients treated with hemodialysis or peritoneal dialysis were recruited from Dutch hospitals and dialysis centers. Patients completed self-report questionnaires at baseline (n = 175) and six months follow-up (n = 130). Multiple regression analyses were performed. RESULTS: Higher scores on factors related to negative outcome expectancies at baseline, especially helplessness and worrying, and less perceived social support were significantly related to worse HRQOL six months later. When controlling for baseline HRQOL, besides sex and comorbidity, helplessness remained significantly predictive of worse HRQOL six months later, indicating that helplessness is associated with changes in HRQOL over time. CONCLUSIONS: Negative outcome expectancies and social support are relevant markers for HRQOL and/or changes in HRQOL over time. PRACTICE IMPLICATIONS: Negative outcome expectancies could be prevented or diminished by enhanced treatment information, an improved patient-clinician relationship, and interventions that promote adaptive and realistic expectations. Additionally, increasing supportive social relationships could be a relevant treatment focus.

Sensitive and practical screening instrument for malnutrition in patients with chronic kidney disease.

OBJECTIVES: The aims of this study were to examine the diagnostic accuracy of the Malnutrition Universal Screening Tool (MUST) and the Patient-Generated Subjective Global Assessment Short Form (PG-SGA-SF) for detecting malnutrition in chronic kidney disease (CKD), study individual contributions of MUST and PG-SGA screening items to the explained variance in nutritional status (NS), and examine whether the PG-SGA-SF score, in combination with one of the items of the clinician's part of the cPG-SGA, can be used as a valid and compact nutrition assessment tool in patients with CKD. METHODS: This was a cross-sectional observational study with 123 patients with CKD who were screened for malnutrition risk by MUST and PG-SGA-SF. NS was determined by complete PG-SGA. Overall accuracy was calculated by the receiver operating curve area under the curve (ROC-AUC). Explained variance of individual screening items was assessed by Nagelkerke's R2, total explained variance was assessed by the increase of R2 after addition of items in manual stepwise forward selection. RESULTS: Of the patients, 44% were malnourished, which was detected by MUST in 24% and by PG-SGA-SF in 78%. Items "body mass index (BMI)" and "no food intake" of the MUST together explained only 3.7% of the variance in NS, whereas the item "nutrition impact symptoms" (NIS) of the PG-SGA-SF explained 57%. Total explained variance in NS by MUST and PG-SGA-SF were 15% and 74%, respectively. The PG-SGA-SF combined with the "metabolic stress" item explained most (87%) and had a sensitivity of 94% to detect malnutrition. CONCLUSIONS: Most malnourished patients with CKD failed to be identified with the MUST, whereas the PG-SGA-SF detected the majority of them with the screening item "NIS" having the highest individual contribution to the explained variance in NS. Combination of PG-SGA-SF with the item "metabolic stress" had the highest overall accuracy to detect malnutrition.

Outcome of Kidney Allografts in Recipients With a Femoral Arteriovenous Fistula: Report of Two Cases.

Two patients, who were on hemodialysis over a femoral arteriovenous fistula, were transplanted in our center. Despite adequate blood pressure, perfusion of the renal allograft remained poor after completion of the vascular anastomoses. Ligation of the femoral arteriovenous fistula (1.6 L/min) led to adequate perfusion. Initial graft function was good. Although it remains unclear whether ischemia of a renal allograft is caused by venous hypertension or vascular steal due to a femoral arteriovenous fistula, it might be necessary to ligate a femoral arteriovenous fistula to obtain adequate graft perfusion.

Usefulness of intraoperative parathyroid hormone measurements in patients with renal hyperparathyroidism.

BACKGROUND: In renal hyperparathyroidism, it remains unclear whether intraoperative parathyroid hormone (PTH) measurements can predict postoperative outcome and guide the extent of surgical exploration. METHODS: In 42 parathyroidectomies for renal hyperparathyroidism, we analyzed the predictive value of the Miami Criterion of 50% intraoperative PTH decrease. We used receiver operating characteristic (ROC) curves to find the criterion with the best diagnostic performance. We also investigated whether the whole PTH assay improved accuracy. RESULTS: Twenty-six operations (62%) resulted in normal postoperative PTH. With the Miami Criterion, cure was predicted with a sensitivity of 95% and specificity of only 8%. Specificity could be improved to 50% using a 70% PTH decrease as cut-off level. The whole PTH assay did not improve accuracy. CONCLUSION: Prediction of cure after parathyroidectomy for renal hyperparathyroidism might be improved with a criterion of 70% PTH decrease 10 minutes after excision of all parathyroid glands. Prospective analysis needs to validate this new criterion.

Biocompatibility and tolerability of a purely bicarbonate-buffered peritoneal dialysis solution.

BACKGROUND: Novel peritoneal dialysis solutions are characterized by a minimal content of glucose degradation products and a neutral pH. Many studies have shown the biocompatibility of neutral lactate-buffered solutions; however, until now, the effect of purely bicarbonate-buffered solutions has not been intensively studied in vivo. METHODS: This study was an open label, prospective, crossover multicenter trial to investigate the biocompatibility of a purely bicarbonate-buffered solution (bicPDF) by measuring biocompatibility parameters such as cancer antigen 125 (CA125) in peritoneal effluent. 55 patients were enrolled in the study. After a 2-week run-in phase, 53 patients could be randomized into 2 groups, starting with either standard lactate-buffered peritoneal dialysis fluid (SPDF) for 12 weeks (phase 1) and then switching to bicPDF for 12 weeks (phase 2), or vice versa. Overnight peritoneal effluents were collected at baseline and at the end of phases 1 and 2 and were tested for CA125, hyaluronic acid, vascular endothelial growth factor (VEGF), tumor necrosis factor-alpha (TNF-alpha), interleukin 6 (IL-6), interferon gamma (IFNgamma), and transforming growth factor-beta(1) (TGF-beta1). Total ultrafiltration and residual renal function were also assessed. At the end of the study, pain during fluid exchange and dwell was evaluated using special questionnaires. RESULTS: 34 patients completed the study; 27 of them provided data for analysis of the biocompatibility parameters. CA125 levels in overnight effluent were significantly higher with bicPDF (61.9 +/- 33.2 U/L) than with SPDF (18.6 +/- 18.2 U/L, p < 0.001). Hyaluronic acid levels were significantly lower after the use of bicPDF (185.0 +/- 119.6 ng/mL) than after SPDF (257.4 +/- 174.0 ng/mL, p = 0.013). Both TNF-alpha and TGF-beta1 showed higher levels with the use of bicPDF than with SPDF. No differences were observed for IL-6, VEGF, or IFNgamma levels. We observed an improvement in the glomerular filtration rate with the use of bicPDF but no differences were observed for total fluid loss. Pain scores could be analyzed in 23 patients: there was no difference between the solutions. CONCLUSIONS: The use of a purely bicarbonate-buffered low-glucose degradation product solution significantly changes most of the peritoneal effluent markers measured, suggesting an improvement in peritoneal membrane integrity. Additionally, it seems to have a positive effect on residual renal function.

Microbiological quality and quality control of purified water and ultrapure dialysis fluids for online hemodiafiltration in routine clinical practice.

During online hemodiafiltration, patients are directly infused with sterile substitution solutions to maintain fluid balance. Adequate water treatment and a well-organized quality control process are essential to provide non-pyrogenic fluids with consistent optimal quality. We sought to assess water quality, the water treatment system, and the methods for surveillance of microbiological water quality in 10 Dutch dialysis centers that routinely treat patients with hemodiafiltration. Microbiological monitoring results (micro-organisms and endotoxins) were collected over a 1-year period representing 11,258 hemodiafiltration sessions covering 97 patients. In all centers, water purification was based on a reverse osmosis module in combination with a second reverse osmosis and/or an electrodeionizer. All centers regularly and routinely monitored the microbiological purity of the dialysis water with adequate analytical methods but with variable monitoring frequency. Microbiological assessments were compliant with reference quality levels in 3923 of 3961 samples. Our study suggests that non-pyrogenic substitution fluids can be produced online for a prolonged period of time. It is likely that the current Dutch Quality of Care Guideline has contributed to high-quality water treatment and a well-organized control process.

Foot volume increase on nifedipine is not prevented by pretreatment with diuretics.

OBJECTIVE: Despite their natriuretic effects, dihydropyridine calcium-channel blockers (CCBs) often induce ankle oedema, probably due to vasodilation in the dependent legs. Since concomitant administration of frusemide does not prevent the acute increase in foot volume on nifedipine, we investigated whether diuretic pretreatment attenuates foot swelling on CCBs. METHODS: In four separate experiments, 10 healthy volunteers received: (i) 20 mg of nifedipine without active pretreatment (pretreatment with placebo only); (ii) 20 mg of nifedipine after 5 days' treatment with amiloride 5 mg twice daily; (iii) 20 mg of nifedipine after 5 days' treatment with chlorthalidone 50 mg once daily; and (iv) no active drugs (pretreatment with placebo and placebo in place of nifedipine) as the control. Foot volumes were measured using an accurate water displacement technique (intra-individual coefficient of variance 0.27%). RESULTS: Amiloride and chlorthalidone pretreatment induced marked volume depletion, with a 2-3% reduction in body weight, a 5-10% increase in haematocrit and a 14-23% increase in plasma colloid osmotic pressure. In addition, the mean +/- SEM foot volume after both chlorthalidone (1282 +/- 37 ml) and amiloride (1289 +/- 40 ml) was lower than without pretreatment (1315 +/- 38 ml) (P < 0.05). Neither amiloride nor chlorthalidone significantly influenced the acute increase in foot volume on nifedipine. However, due to pretreatment effects, the foot volume after nifedipine was higher (P < 0.05) without pretreatment (1356 +/- 36 ml) than after amiloride (1318 +/- 38 ml) or chlorthalidone (1319 +/- 37 ml). Amiloride significantly attenuated the natriuretic effect of nifedipine, whereas chlorthalidone prevented the nifedipine-induced rise in colloid osmotic pressure and haematocrit. CONCLUSIONS: Diuretic pretreatment and the concomitant volume depletion did not prevent acute foot swelling on nifedipine, although the absolute foot volume remained lower after such pretreatment. Therefore diuretics mitigate the oedema of CCBs, but do not directly interfere with oedema formation.

Diagnosis of renal and hepatic cyst infections by 18-F-fluorodeoxyglucose positron emission tomography in autosomal dominant polycystic kidney disease.

BACKGROUND: Infection of a renal or hepatic cyst is a serious complication of autosomal dominant polycystic kidney disease (ADPKD). Although crucial for successful management, early diagnosis is difficult, largely because of nonspecific symptoms and limitations of conventional imaging techniques. Because of an increased metabolic rate, inflammatory cells take up large amounts of glucose. 18-F-fluorodeoxyglucose (FDG), therefore, represents a promising agent for detection of cyst infections using positron emission tomography (PET). METHODS: The authors studied the results of 7 FDG PET scans in 3 ADPKD patients suspected of renal or hepatic cyst infection. Two PET scans were performed in patient A (PET 1 and 2), one PET scan was performed in patient B (PET 3), and 4 PET scans were performed in patient C (PET 4, 5, 6 and 7). RESULTS: FDG PET identified the infected cysts in 2 episodes of renal cyst infection (PET 2 and 3), 2 episodes of hepatic cyst infection (PET 6 and 7), and 1 episode of both renal and hepatic cyst infection (PET 1). In patient C, FDG PET was normal after 6 weeks of antibiotic treatment for hepatic cyst infection (PET 4) and again at a time when hepatic cyst infection was suspected, but eventually colchicine intoxication was diagnosed (PET 5). CONCLUSION: In these patients, FDG PET proved very helpful in diagnosing and in excluding renal and hepatic cyst infections. It is concluded that FDG PET is a promising new imaging technique enabling early identification of renal and hepatic cyst infections in ADPKD patients.

Economic impact of extended time on peritoneal dialysis as a result of using polyglucose: the application of a Markov chain model to forecast changes in the development of the ESRD programme over time.

BACKGROUND: The use of polyglucose as a peritoneal dialysis (PD) fluid extends time on PD treatment. It is anticipated, therefore, that the share of patients treated with PD will be positively influenced. The relationship between extension of PD treatment time and an increase of the PD treatment share, however, is complex and needs further investigation. In this paper, a Markov chain model was applied to investigate the impact of extended time on PD treatment for the PD share in all dialysis patients in The Netherlands. Furthermore, the economic impact of the extended time on treatment (ETOT) was explored. METHODS: Scenarios were forecast over a 10 year period using aggregate data from the End-Stage Renal Registry in The Netherlands (Renine). Three scenarios were simulated in which the median PD technique survival was extended by 8, 10 and 12 months. Two other scenarios explored the impact of the combined effect of ETOT of 10 months together with a 10% and 20% increase of PD inflow shares. Reductions of costs to society due to ETOT were estimated using Dutch cost data on renal replacement therapies. RESULTS: PD share increases from 30.0% in the null scenario to 34.5% in the scenario with an ETOT of 10 months and an increased PD inflow share of 20%. The reduction in total costs to society of the renal replacement therapies is 0.96%. The average societal costs per discounted patient year for haemodialysis (HD) are 84 100 euros. For PD, these costs are 60 300 euros. A shift from HD to PD results in average cost savings of 28% per patient year. CONCLUSIONS: In view of high dialysis costs to society, a reduction of 0.96% can be considered to be relevant for healthcare policy makers.

Initial spontaneous remission of posttransplantation Epstein Barr virus-related B-cell lymphoproliferative disorder of the skin in a renal transplant recipient: case report and review of the literature on cutaneous B-cell posttransplantation lymphoproliferative disease.

Primary cutaneous posttransplantation B-cell lymphoproliferative disorder is rare. The few previously reported patients were all treated with surgery, radiotherapy, or lowering of immunosuppression. We describe a 65-year-old woman presenting with an intermammary skin ulcer 21 years after renal transplantation, proving on biopsy to be an Epstein Barr virus (EBV)-related posttransplantation B-cell lymphoproliferative disorder. A few weeks later, the skin ulcer showed complete clinical regression. Hematologic staging evaluation showed no evidence of extracutaneous involvement. Despite continuation of immunosuppression, the patient stayed free of disease until 18 months after initial diagnosis, when she developed a progressive hemiparesis and died of acute myocardial infarction. At autopsy, a recurrent B-cell posttransplantation lymphoproliferative disorder in the left side of the thalamus region (measuring 1 x 0.8 cm) was established. The long interval between the primary cutaneous lesion and the localized brain recurrence supports primary skin posttransplantation lymphoproliferative disorder, especially because the patient was not treated for her posttransplantation lymphoproliferative disorder. Review of the literature on primary cutaneous posttransplantation B-cell lymphoproliferative disorder and this case gives the impression that cutaneous posttransplantation B-cell lymphoproliferative disorders of B-cell lineage behave in a more benign manner than identical lesions arising extracutaneously. Because of the rare occurrence of posttransplantation B-cell lymphoproliferative disorder primarily involving the skin, extracutaneous origin should be excluded. If B-cell lineage can be established, EBV is present, alterations in oncogenes or tumor suppressor genes associated with malignant lymphoma are absent, and bcl-6 gene mutation associated with progression is absent, initially aggressive treatment might be avoided. However, long-term clinical follow-up with prolonged maintenance therapy (reduction of immunosuppression or antiviral therapy) for prevention of recurrent posttransplantation lymphoproliferative disorder seems indicated, as is demonstrated by the case reported in the current study.