Quality of life of adolescents with end-stage renal disease and kidney transplant

The health-related quality of life (HRQOL) of adolescents with end-stage renal disease (ESRD) is an important marker of disease burden. Our aims were to investigate HRQOL in a group of children and adolescents with ESRD and to compare them with the reference population norms. Ours was a cross-sectional study of 81 patients aged 10 years to 21 years with ESRD (68 with kidney transplants and 13 on dialysis) at five Spanish paediatric nephrology centres. HRQOL was investigated with the Spanish version of the child health and illness profile, adolescent edition (CHIP-AE). Clinical variables such as underlying diagnosis, number of rejection episodes, pre-emptive transplantation, anaemia and height were also analysed. No differences were found between patients with kidney transplants and their healthy peers in any domain or sub-domain of CHIP-AE. The group on dialysis scored lower than healthy controls and patients with transplants for satisfaction with health. Discomfort was higher in patients with transplants who had suffered one rejection episode. Physical discomfort was increased in anaemic patients with transplants. Short patients scored less in the satisfaction domain, with lower self-esteem and lower satisfaction with health. Adolescents with kidney transplants had better satisfaction with health than the group on dialysis, which matched the level of a healthy population. Further long-term prospective research is warranted. The work was carried out at the Divisions of Paediatric Nephrology of the following hospitals in Spain: Central de Asturias (Oviedo), Clínico de Santiago, Infantil La Paz (Madrid), Miguel Servet (Zaragoza) and Cruces (Bilbao)     

血液透析和腹膜透析患者生活质量比较

目的调查我院维持中心血液透析、腹膜透析治疗患者的生活质量，为临床合理选择治疗方案提供参考。方法对维持目前透析方式6个月以上的中心血液透析、腹膜透析患者，通过查阅病历资料、门诊随诊和问卷调查等方式，调查透析患者现阶段的生活质量（KDQOL～SF）。结果完成病例调查86例，其中血液透析36例，腹膜透析50例。两组患者在性别、年龄、文化程度、付费方式、收入、原发病、透析时间等背景上没有显著差异。腹膜透析组在总体健康、精神健康、情感职能、躯体疼痛以及肾病负担、社交质量、症状与不适、肾病影响、患者满意度等指标得分高于血液透析组。结论腹膜透析患者在生活质量的某些维度上优于血液透析患者，值得进一步推广。     

Valve replacement surgery in patients with end-stage renal disease: long-term results

BACKGROUND: The life expectancy of patients with chronic renal failure who are dependent on dialysis is very poor. This study was undertaken to determine time-related outcomes in dialysis patients requiring cardiac valve replacement. METHODS: From 1994 to 2001, 29 end-stage renal disease (ESRD) patients on hemodialysis (HD) program underwent 30 valve replacement operations: 29 received mechanical valves (97%), and one received bioprosthetic valves. The sites of valve replacement were 11 aortic (36.7%), 18 mitral (60%), and one both aortic and mitral (3.3%). Mean age was 42.46 +/- 14.26 years (range 17-75 years). Follow-up was completed in 28 patients (96.5%). RESULTS: Early postoperative mortality (in the first 30 days) was 3.4% (n = 1). The overall estimated Kaplan-Meier survival was 56.7% at 36 months, 46.7% at 60 months, and 43.3% at 96 months. HD program was discontinued for two patients after renal transplantation in the follow-up period. All patients, except the one with bioprosthesis, used warfarin sodium for anticoagulation and none of them had bleeding. One of the patients had a major cerebrovascular accident (CVA) and another one had a minor CVA at the follow-up (6.7%). CONCLUSIONS: Life quality is better and life expectancy is longer after valve replacement in ESRD patients who have valvular disease. Also, longer life expectancy increases the probability for finding donors for kidney transplantation.     

315例终末期肾病血液透析患者生活质量的调查分析

目的对315例血液透析患者的生活质量进行调查研究,确定相关影响因素,为采取措施提高患者的生活质量提供参考。 方法采用血液透析患者生活质量调查表对苏州市区3家三级甲等医院315例终末期肾病维持性血液透析患者进行调查。 结果多因素分析发现年龄大者生理健康得分(PCS)和总体健康得分(SF－6D)低(P<0.05),已婚或同居者的PCS、SF－6D、肾脏疾病总分(KDCS)比未婚或独居者高(P<0.05),随患者学历的增加,心理健康得分(MCS)、SF－6D和KDCS提高(P<0.05),有合并症者的MCS、KDCS较低(P<0.05),有并发症者的PCS亦较低(P<0.05)。PCS和SF－6D随透析龄的增加而降低(P<0.05),每周透析≤2次者SF－6D较低(P<0.05)。 结论影响苏州市血液透析患者生活质量的相关因素为年龄、婚姻状况、文化程度、合并症、并发症和透析龄,应采取措施对高危人群进行干预。     

Therapeutic camping for children with end-stage renal disease

Therapeutic camping experiences for children with end-stage renal disease (ESRD) have proliferated in the United States and abroad. This report is based on the results of a survey designed to accumulate data on the development and implementation of 20 such camps. Children attending camp ranged in age from 1 year to 19 years. Single disease-specific camps were most common, while camps for children with a variety of chronic illnesses, including ESRD, and mainstream camps were also conducted. Facilities were available for hemodialysis and continuous ambulatory peritoneal dialysis, but not automated peritoneal dialysis, in the majority of surveryed camps. Dialysis nurses, pediatric nephrologists, dietitians and social workers were the medical personnel that most frequently participated in the camps. On average, 32 dialysis/transplant patient campers (range 6–100) attended camp for a 1-week session. Therapeutic camping experiences for children with ESRD are extremely successful and attempts to increase the availability of similar camps should be encouraged.Presented in part at the 13th Annual Conference on Peritoneal Dialysis, 7–9 March 1993, San Diego, California, USA.     

老年终末期肾病患者的透析方式选择

随着人口老龄化加剧,在全球范围内需要接受肾脏替代治疗的老年终末期肾脏病(ESRD)患者人数日益增加。老年ESRD患者由于年龄老化、生理机能下降、合并症多、自我维护能力差、预期生存时间短等特点给透析治疗亦带来了诸多困难。老年ESRD患者在透析的治疗时机、透析方式的选择上均具有其特殊性,需要根据患者原发病因、评估透析治疗可能带来的并发症、所在地医疗卫生条件等制定个体化的治疗方案。除了医疗技术因素外,还需综合考虑如患者预期寿命、对生活质量的期望以及对患者家庭的影响等其他非医疗因素。     

Towards guidelines for dialysis in children with end-stage renal disease

There are few data describing the current practices of treatment selection for children with end-stage renal disease (ESRD). In an effort to establish a consensus among Spanish pediatric nephrologists for inclusion and exclusion criteria for renal replacement therapy in children with ESRD, in 1995 we surveyed members of the Spanish Pediatric Nephrology Association. Although only 43% of members responded, pediatric nephrologists and bioethicists studied the results and compiled a list of ten guidelines for treatment of children with ESRD. The proposed guidelines are meant to be a starting point for further discussion. An emphasis on flexibility, individual case assessment, and consideration of the best interests of the patient must remain central to any treatment plan. Decision making should ideally be shared by parents, professionals, the child, when appropriate, and ethics committees, as necessary. Received: 9 February 1999 / Revised: 21 June 1999 / Accepted: 28 June 1999     

Overview: end-stage renal disease in the developing world

Although the vast majority of patients with end-stage renal disease (ESRD) worldwide live in what is called the developing world, little is known about its epidemiology and management. With the current paucity of credible and adequately representative registries, it is justified to resort to innovative means of obtaining information. In this attempt, world-renowned leading nephrologists in 10 developing countries collaborated in filling a 103-item questionnaire addressing epidemiology, etiology, and management of ESRD in their respective countries on the basis of integrating available data from different sources. Through this joint effort, it was possible to identify a number of important trends. These include the expected high prevalence of ESRD, despite the limited access to renal replacement therapy, and the dependence of prevalence on wealth. Glomerulonephritis, rather than diabetes, remains as the main cause of ESRD with significant geographical variations in the prevailing histopathological types. The implementation of different modalities of renal replacement therapy (RRT) is inhibited by the lack of funding, although governments, insurance companies, and donations usually constitute the major sponsors. Hemodialysis is the preferred modality in most countries with the exception of Mexico where chronic ambulatory peritoneal dialysis (CAPD) takes the lead. In several other countries, dialysis is available only for those on the transplant waiting list. Dialysis is associated with a high frequency of complications particularly HBV and HCV infections. Data on HIV are lacking. Aluminum intoxication remains as a major problem in a number of countries. Treatment withdrawal is common for socioeconomic reasons. Transplantation is offered to an average of 4 per million population (pmp). Recipient exclusion criteria are minimal. Donor selection criteria are generally loose regarding tissue typing, remote viral infection, and, in some countries, blood-relation to the recipient in live-donor transplants. Cadaver donors are accepted in many countries participating in this survey. Treatment outcomes with different RRT modalities are, on the average, inferior to the internationally acknowledged standards largely due to infective and cardiovascular complications.     

New trends on health related quality of life assessment in end-stage renal disease patients

Health related quality of life (HRQOL) is auseful measure in the analysis of the output ofmedical interventions in groups of chronicpatients like end-stage renal disease (ESRD)patients. From the 1980s to the present day, theinterest in evaluating the HRQOL of ESRDpatients has been continually growing. A reviewof published studies shows the existence ofimportant differences in the applied conceptualmodel of HRQOL, in the assessment instrumentsused, in the methods of data collectionrecording, and in the results andconclusions. In this paper we tried to answer some of themain questions which could appear whennephrologists begin to use the HRQOL measureswith renal patients: we clearly define theconcept of HRQOL; we made recommendations aboutthe instruments to evaluate HRQOL (generic vsspecific instruments); and we show how torefine a HRQOL score to make it practical andcomprehensible (the standardization of thescores by age and gender).     

The quality of life in end stage renal disease care

Abstract The improved prognosis and survival statistics of both renal transplantation and dialysis have focused attention on the quality of life offered by these treatments. Using a standardized questionnaire, we assessed the quality of life of 612 patients undergoing renal replacement therapy at our center. Of these patients, 359 had been transplanted and 253 patients were on dialysis. Concerning the sociodemographic data, only the time on specific treatment was longer in dialysis patients than in transplanted patients (49.2 versus 55.6 months, P < 0.05). Most complaints were more common in dialysis patients than in transplanted patients. Only the side effects of medication were seen more in transplanted patients ( P < 0.005). Life satisfaction was higher in transplanted patients than in dialysis patients. Dialysis patients were more anxious ( P < 0.05) and more depressed ( P < 0.001) than transplanted patients. Transplanted patients also felt that they had more social support than did dialysis patients. Overall life quality was almost equal between patients on hemodialysis and patients on peritoneal dialysis, and between patients on the waiting list for transplantation and those not on the waiting list. Despite a significantly better quality of life after renal transplantation, the percentage of patients working remained unchanged. (57.5% versus 57.8%, P = n.s.). We conclude that despite an improved quality of life after renal transplantation, these patients are economically not more productive than patients on dialysis.     

Screening for Fabry disease in male patients with end-stage renal disease in western France

ContextFabry disease is a rare X-linked genetic disease due to pathogenic variants in the GLA gene. Classic Fabry disease is characterized by glycosphingolipids accumulation in all organs including the kidney, resulting in end-stage renal disease in a subset of male patients. Fabry disease should therefore be considered in the differential diagnosis of patients with unexplained end-stage renal disease.ObjectiveWe performed a prospective screening study in Western France to determine the prevalence of Fabry disease in a large population of dialyzed and transplanted patients.Patients and methodsPatients meeting the inclusion criteria (males, 18-70 years with end-stage renal disease of unknown or vascular origin) were selected from the REIN® registry and the CRISTAL® database. Screening on filter papers was performed after patient consent was obtained during either a dialysis session or a transplantation follow-up visit.ResultsOne thousand five hundred and sixty-one end-stage renal disease male patients were screened and 819 consented (dialysis: n = 242; transplant: n = 577). One single patient was found with decreased alpha-galactosidase levels <25%. GLA sequencing identified the p.Phe113Leu variant in favor of an unknown superimposed kidney disease responsible for end-stage renal disease since this GLA pathogenic variant is associated with a later-onset cardiac form of Fabry disease with minimal kidney involvement. Family cascade genotyping revealed a previously undiagnosed affected brother.ConclusionThe prevalence of Fabry disease in end-stage renal disease patients was 0.12%, questioning the efficacy of this screening strategy with respect to the low prevalence. However, beside the benefit for the patient and his family, the increased awareness of Fabry disease among participating nephrologists may be of interest for future patients.     

Pediatric end stage renal disease health-related quality of life differs by modality: a PedsQL ESRD analysis

We previously validated the 34-item PedsQL 3.0 End Stage Renal Disease (ESRD) Module designed to measure pediatric ESRD-specific health-related quality of life (HRQOL) in children and adolescents receiving maintenance dialysis or with a renal transplant. The study reported here was undertaken to assess for potential HRQOL differences between ESRD modality in children with ESRD and their parents using the PedsQL 3.0 ESRD Module. Parents of patients with a renal transplant reported a significantly higher HRQOL for their children than parents of pediatric patients receiving dialysis on all ESRD Module Scales except the Perceived Physical Appearance Scale, with the majority of the effect sizes in the medium range. Pediatric renal transplant patients self-reported comparable HRQOL to pediatric patients receiving dialysis across the ESRD Module Scales, with the exception of the Family and Peer Interaction Scale, in which pediatric renal transplant patients self-reported significantly higher HRQOL than pediatric patients receiving dialysis. Our cross-sectional data suggest that parents of children with ESRD observe a positive impact from renal transplantation on the majority of HRQOL domains compared to dialysis, whereas children self-report generally non-significant small effect size differences in favor of renal transplantation. These findings suggest that the PedsQL ESRD 3.0 Module may be used to identify ESRD- and modality-specific challenges that impact pediatric patient HRQOL. Electronic supplementary material  The online version of this article (doi:) contains supplementary material, which is available to authorized users.     

The management of end-stage renal disease in infants with imperforate anus

Genitourinary malformations are frequently associated with imperforate anus, and death from renal failure is reported in up to 6% of children with supralevator imperforate anus. In recent years, advances in renal transplantation and the management of end-stage renal disease (ESRD) have extended these therapies to infants in the first 2 years of life. In infants with imperforate anus and ESRD, it is unclear if the additional burdens of the anorectal malformation and its staged repair contraindicate dialysis and transplantation. This report describes our experience with three such infants and outlines an approach to their care, addressing the following key issues: the initial surgical management of the imperforate anus, the careful search for associated urinary tract and other malformations, the ESRD management, and the appropriate timing of the staged bowel reconstruction and renal transplantation. These cases confirm that such children may be successfully managed by dialysis and renal transplantation co-ordinated with bowel reconstruction; however, there remain the longterm risks of immunosuppression, bladder and bowel dysfunction, and associated congenital anomalies.     

Acacia gum supplementation of a low-protein diet in children with end-stage renal disease

Patients with end-stage renal disease (ESRD) die in the absence of renal replacement therapy (RRT). In developing countries RRT is not uniformly available and treatment often relies on conservative management and intermittent peritoneal dialysis (IPD). This study investigates the possibility of using acacia gum supplementation to improve the quality of life and provide children with ESRD with a dialysis-free period. Three patients referred to our hospital with ESRD during a 3-month period were enrolled in a therapeutic trial to investigate the efficacy of acacia gum (1 g/kg per day in divided doses) as a complementary conservative measure aimed at improving the quality of life. Inclusion criteria included a pre-dialysis creatinine clearance of <5 ml/min, current dietary restrictions and supplementation, at least one dialysis session to control uremic symptoms, absence of life-threatening complications, and sufficient motivation to ensure compliance with the study protocol. One patient complied with the protocol for only 10 days and died after 6 months, despite IPD. Two patients completed the study. Both reported improved well-being. Neither became acidotic or uremic, and neither required dialysis during the study period. Both patients maintained urinary creatinine and urea levels not previously achieved without dialysis. In conclusion, dietary supplementation with acacia gum may be an alternative to renal replacement therapy to improve the quality of life and reduce or eliminate the need for dialysis in children with ESRD in some developing countries.     

继发性甲状旁腺功能亢进症与终末期肾病轻度认知障碍的关系研究

目的 探讨继发性甲状旁腺功能亢进症(secondary hyperparathyroidism,SHPT)与终末期肾病(end stage renal disease,ESRD)轻度认知障碍(mild cognitive impairment,MCI)发生的关系.方法 选取2018年1月1日至2019年12月31日于保...     

School adjustment of children with end-stage renal disease

We examined adjustment to school of children with end-stage renal disease (ESRD) and the psychological condition of their mothers; 30 children on continuous ambulatory peritoneal dialysis (CAPD), 35 children with a transplant and 33 healthy children were studied. A factorial ANOVA statistic found that the mean scores for non-academic problems (psychological factors) differed significantly across the three groups, being highest in CAPD children and lowest in healthy children. No significant differences between CAPD and transplant children were found for school maladjustment with academic problems, although the prevalence differed significantly across the groups, being highest in transplant children and lowest in healthy children. The mothers of children with ESRD were prone to feel various anxieties and dependency.     

The efficacy of low-dose tadalafil in patients undergoing hemodialysis with end-stage renal disease

Background: Erectile dysfunction (ED) is a disorder that is frequently observed in people with chronic kidney disease who undergo hemodialysis (HD). In the context of evidence-based medicine, we aimed to investigate the effect of low-dose tadalafil on sexual function in patients undergoing HD.

Methods: The medical records of 30 males (aged 29–65?years) with end-stage renal disease (ESRD) on a HD program, and who had received 5?mg tadalafil twice weekly, were retrospectively evaluated. Changes in erectile and ejaculatory function were evaluated using the International Erectile Function Index questionnaire, the Erection Hardness Scale (EHS), and the Male Sexual Health Questionnaire (MSHQ).

Results: The mean age of the patients was 47.6?±?10.1?years, their mean body mass index was 24.3?±?4.2?kg/m², their mean hemoglobin was 11.9?±?0.9?g/dL, and their mean creatinine clearance was 5.8?±?1.1?mL/min. At the third month of treatment, 36.6% of the patients had no ED, 40% had mild ED, 10% had mild-to-moderate ED, and 13.3% had moderate ED. The mean MSHQ scores (p?p?=?.001) were significantly improved. There was no significant difference between Beck's Depression Inventory scores (p?>?.05), but Hamilton anxiety rate scores decreased significantly (p?=?.001). The quality-of-life score improved throughout the study period (p?Conclusions: Tadalafil therapy is an effective therapeutic option in patients with ESRD who undergo HD, not only for the treatment of ED, but also for ejaculatory function, with acceptable adverse effects.     

Unique risks for mortality in patients with end-stage renal disease undergoing nonemergent colorectal surgery

Background

The aim of this study was to identify unique risk factors for mortality in patients with end-stage renal disease undergoing nonemergent colorectal surgery.

Methods

A multivariate logistic regression model predicting 30-day mortality was constructed for patients with end-stage renal disease undergoing nonemergent colorectal procedures. Data were obtained from the National Surgical Quality Improvement Program (2005–2010).

Results

Among the 394 patients analyzed, those with serum creatinine levels >7.5 mg/dL had .07 times the adjusted mortality risk of those with levels <3.5 mg/dL. For colorectal surgery patients, the average serum creatinine level was 5.52 ± 2.6 mg/dL, and mortality was 13% (n = 50).

Conclusions

High serum creatinine was associated with a lower risk for mortality in patients with end-stage renal disease, even though creatinine is often considered a risk factor for surgery. These results show how variables from a patient-centered subpopulation can differ in meaning from the general population.