Identifying Important Outcomes for Young People With CKD and Their Caregivers: A Nominal Group Technique Study.

RATIONALE & OBJECTIVE: Chronic kidney disease (CKD) has wide-ranging and long-term consequences for young people and their families. The omission of outcomes that are important to young people with CKD and their caregivers limits knowledge to guide shared decision making. We aimed to identify the outcomes that are important to young people with CKD and their caregivers. STUDY DESIGN: We used the nominal group technique whereby participants identified and ranked outcomes and explained their priorities. SETTINGS & PARTICIPANTS: Young people with CKD (stages 1-5, dialysis, or transplantation) and their caregivers were purposively sampled from 6 centers across Australia, the United States, and Canada. ANALYTICAL APPROACH: Importance scores were calculated (scale of 0-1), and qualitative data were analyzed thematically. RESULTS: 34 patients (aged 8-21 years) and 62 caregivers participated in 16 groups and identified 48 outcomes. The 5 highest ranked outcomes for patients were survival (importance score, 0.25), physical activity (0.24), fatigue (0.20), lifestyle restrictions (0.20), and growth (0.20); and for caregivers, kidney function (0.53), survival (0.28), infection (0.22), anemia (0.20), and growth (0.17). 12 themes were identified reflecting their immediate and current priorities (wanting to feel normal, strengthening resilience, minimizing intrusion into daily life, imminent threats to life, devastating family burdens, and seeking control over health) and considerations regarding future impacts (protecting health/development, remaining hopeful, concern for limited opportunities, prognostic uncertainty, dreading painful and invasive procedures, and managing expectations). LIMITATIONS: Only English-speaking participants were recruited. CONCLUSIONS: Kidney function, infection, survival, and growth were the highest priorities for patients with CKD and their caregivers. Young people with CKD also prioritized highly the outcomes that directly affected their lifestyle and sense of normality, while caregiver's highest priorities concerned the long-term health of their child, current health problems, and the financial and family burdens of caring for a child with CKD.

Child and Parental Perspectives on Communication and Decision Making in Pediatric CKD: A Focus Group Study.

BACKGROUND & OBJECTIVES: Effective communication and shared decision making improve quality of care and patient outcomes but can be particularly challenging in pediatric chronic disease because children depend on their parents and clinicians to manage complex health care and developmental needs. We aimed to describe the perspectives of children with chronic kidney disease (CKD) and their parents with regard to communication and decision making. STUDY DESIGN: Qualitative study. SETTING & PARTICIPANTS: Children with CKD (n=34) and parents (n=62) from 6 centers across 6 cities in Australia, Canada, and the United States participated in 16 focus groups. ANALYTICAL APPROACH: Transcripts were analyzed thematically. RESULTS: We identified 4 themes: (1) disempowered by knowledge imbalance (unprepared and ill-informed, suspicion of censorship, and inadequacy as technicians), (2) recognizing own expertise (intuition and instinct unique to parental bond, emerging wisdom and confidence, identifying opportunities for control and inclusion, and empowering participation in children), (3) striving to assert own priorities (negotiating broader life impacts, choosing to defer decisional burden, overprotected and overruled, and struggling to voice own preferences), and (4) managing child's involvement (respecting child's expertise, attributing "risky" behaviors to rebellion, and protecting children from illness burden). LIMITATIONS: Only English-speaking participants were recruited, which may limit the transferability of the findings. We collected data from child and parent perspectives; however, clinician perspectives may provide further understanding of the difficulties of communication and decision making in pediatrics. CONCLUSIONS: Parents value partnership with clinicians and consider long-term and quality-of-life implications of their child's illness. Children with CKD want more involvement in treatment decision making but are limited by vulnerability, fear, and uncertainty. There is a need to support the child to better enable him or her to become a partner in decision making and prepare him or her for adulthood. Collaborative and informed decision making that addresses the priorities and concerns of both children and parents is needed.

Pediatric continuous renal replacement therapy: have practice changes changed outcomes? A large single-center ten-year retrospective evaluation.

BACKGROUND: To evaluate changes in population characteristics and outcomes in a large single-center pediatric patient cohort treated with continuous renal replacement therapy (CRRT) over a 10 year course, coincident with multiple institutional practice changes in CRRT delivery. METHODS: A retrospective cohort study with comparative analysis of all patients treated from 2004 to 2013 with CRRT in the neonatal, pediatric, and cardiovascular intensive care units within a free-standing pediatric tertiary care hospital. RESULTS: Three hundred eleven total patients were identified, 38 of whom received concurrent treatment with extracorporeal membrane oxygenation. 273 patients received CRRT only and were compared in two study eras (2004-2008 n = 129; 2009-2013 n = 144). Across eras, mean patient age decreased (9.2 vs 7.7 years, p = 0.08), and the most common principal diagnosis changed from cardiac to liver disease. There was an increase in patients treated with continuous renal replacement therapy between cohorts for acute kidney injury of multi factorial etiology (44% vs 56%) and a decrease in treated patients with sepsis (21% vs 11%, p = 0.04). There was no significant difference in survival to hospital discharge between eras (47% vs 49%). Improvement in outpatient follow-up after discharge amongst survivors was seen between study eras (33% vs 54%). CONCLUSIONS: Despite multiple institutional practice changes in provision of CRRT, few changes were seen regarding patient demographics, diseases treated, indications for therapy, and survival over 10 years at a single tertiary care. Recognition of need for follow-up nephrology care following CRRT is improving. Ongoing assessment of the patient population in a changing landscape of care for critically ill pediatric patients remains important.

Health-related quality of life functioning over a 2-year period in children with end-stage renal disease.

BACKGROUND: Optimal care of the pediatric chronic kidney disease/end stage renal disease (CKD/ESRD) patient must now incorporate health-related quality of life (HRQOL) assessment and management. METHODS: This study reports the first data on longitudinal change in global (PedsQL(TM)4.0) and disease-specific (PedsQL(TM)3.0 ESRD Module) HRQOL pediatric ESRD patient and proxy ratings over four assessment periods spanning approximately a 2-year period. General linear mixed modeling was used to analyze associations between patient demographics, medical variables, and patient and proxy HRQOL scores. RESULTS: Self-reported and/or proxy data were available for at least two time-points for 53 patients (age 2-18 years; 60 % male), of whom 27 were receiving in-center hemodialysis. CONCLUSIONS: Patient ratings on global health and physical activity, emotional, and social and disease-specific worry and communication domains were higher (i.e., better) than parent-proxy ratings, confirming the importance of obtaining both sources of information. Patients on dialysis longer, particularly females, reported worse emotional functioning; females also reported more physical appearance concerns. Parents rated older children and those on dialysis longer as functioning worse on multiple global and disease-specific (e.g., fatigue, relationship) domains. Parents also rated children as functioning increasingly worse in school over time. Further, patient ESRD history (acute onset vs. medically managed) impacted how parents viewed the burden of ESRD on their child over time.

Surgical technique for peritoneal dialysis catheter placement in the pediatric patient: a North American survey.

In the present study, we surveyed 425 members of the American Pediatric Surgical Association and the Canadian Association of Pediatric Surgeons to identify prevalent operative techniques used in the placement of peritoneal dialysis catheters by pediatric surgeons. Our survey assessed catheter type, skin and fascial incision orientations, deep-cuff positions, exit-site directions, and omentectomy. We received responses from 156 surgeons (36.7%) and excluded 18 of those responses. Among the assessed responses, 83 surgeons (60%) indicated that they had placed at least 1 catheter in the previous 12 months. Of the 83, 13% had placed 1 catheter, 52% had placed 2 - 5, 16% had placed 6 - 9, and 18% had placed 10+. We observed significant variability in all aspects of surgical technique. The most common catheter configuration was single-cuff (59%), curled end (60%), and non swan neck (72%). The most common surgical approach was a transverse skin incision (52%), a fascial incision through the rectus (68%), a deep cuff between the peritoneum and fascia (46%), a superior-pointing exit site (37%), and a superficial cuff distant to the exit site (53%). Routine omentectomy was reported by 59% of respondents. Only 15% reported using a laparoscopic approach on first attempt. Pediatric surgeons employ a variety of surgical techniques when placing peritoneal catheters. Some of the techniques used vary from the published recommendations. Quality can potentially be improved by wider dissemination of published surgical recommendations.

Staff nurses' perceptions of the work environment in freestanding hemodialysis facilities.

While one suggested cause of the current nursing shortage is nurses' negative perceptions of the work environment, little is known of nephrology nurses' perceptions of the dialysis work environment. The purpose of this study was to assess the extent to which staff nurses who work in freestanding hemodialysis facilities rate the presence of organizational characteristics common to magnet hospitals in their current job. Study findings indicate that staff nurses in hemodialysis units identify several notable features of magnet hospitals in their work settings. However, a majority of nurses disagreed that many attributes of magnet hospitals are present in hemodialysis work environments. This study provides a preliminary description of some of the factors that affect nurses' perceptions of the work environment in freestanding dialysis facilities. Further work is needed in this area.

Staff nurses' perceptions of the work environment in freestanding hemodialysis facilities.

While one suggested cause of the current nursing shortage is nurses' negative perceptions of the work environment, little is known of nephrology nurses' perceptions of the dialysis work environment. The purpose of this study was to assess the extent to which staff nurses who work in freestanding hemodialysis facilities rate the presence of organizational characteristics common to magnet hospitals in their current job. Study findings indicate that staff nurses in hemodialysis units identify several notable features of magnet hospitals in their work settings. However, a majority of nurses disagreed that many attributes of magnet hospitals are present in hemodialysis work environments. This study provides a preliminary description of some of the factors that affect nurses' perceptions of the work environment in freestanding dialysis facilities. Further work is needed in this area.

A standard, noninvasive monitoring of hematocrit algorithm improves blood pressure control in pediatric hemodialysis patients.

Accurate dry weight assessment is difficult in pediatric hemodialysis patients but is essential to prevent chronic fluid overload, hypertension, and cardiovascular morbidity. A noninvasive monitoring (NIVM) of hematocrit-guided ultrafiltration algorithm was studied prospectively in 20 pediatric hemodialysis patients. The algorithm targeted the first 50% of total goal ultrafiltration to be removed during the first hour of dialysis with a maximum blood volume change of 8 to 12% per hour. The second 50% was removed during the remaining treatment time with a maximum blood volume change of 5% per hour. Data that were collected at baseline and 6 mo included weight, BP, number of antihypertensive medications, 24-h ambulatory BP monitoring (ABPM), echocardiogram, and ultrafiltration-associated symptoms. Sixteen of 20 enrolled patients completed the study. No difference was seen between baseline and 6-mo weight, predialysis casual BP, nighttime ABPM, or left ventricular mass index. There was a decrease in postdialysis casual systolic BP, daytime ABPM, number of antihypertensive medications prescribed, and rate of intradialytic events related to ultrafiltration (all P < or = 0.05). Adoption of a standardized NIVM-guided algorithm led to (1) improved ABPM profiles, (2) decreased antihypertensive medication burden, and (3) decreased ultrafiltration-associated symptoms. Wider use of NIVM-guided ultrafiltration may decrease cardiovascular morbidity in pediatric hemodialysis patients.

Noninvasive interventions to decrease hospitalization and associated costs for pediatric patients receiving hemodialysis.

Minimal pediatric data describe hospitalization causes and associated costs for children who receive maintenance hemodialysis, and no data exist to evaluate methods to decrease hospitalization. In 1999, two common causes of hemodialysis patient hospitalization at Texas Children's Hospital were fluid overload/hypertension (FO/HTN) and vascular access thrombosis (VAT). Evaluated is the effect of two noninvasive monitoring programs, monitoring of hematocrit-guided ultrafiltration algorithm and vascular access flow using ultrasound dilution vascular access flow technology, on FO/HTN and VAT in the pediatric maintenance hemodialysis population. This prospective observational study reviewed all hospitalization data for all 51 patients who received maintenance hemodialysis from January 1999 through December 2001 obtained from unit monthly performance improvement meeting records. Hospitalization rates and related costs for FO/HTN and VAT were tracked before and after institution of the noninvasive monitoring programs. Application of the noninvasive monitoring of hematocrit-guided ultrafiltration algorithm since January 2000 significantly decreased hospitalization for FO/HTN (64 total days in 1999, 4 total days in 2000 and 2001 combined) while maintaining acceptable patient BP control and minimizing antihypertensive medication requirements. The vascular access monitoring program using ultrasound dilution vascular access flow technology to direct referral for angioplasty instituted in January 2001 led to a significant decrease in hospitalization for VAT (45 d in 2000 and 21 d in 2001). It is suggested that application of noninvasive technologies to assess patient target dry weight and access flow can significantly decrease pediatric maintenance dialysis patient morbidity and health care cost.

Proactive monitoring of pediatric hemodialysis vascular access: effects of ultrasound dilution on thrombosis rates.

BACKGROUND: Hemodialysis vascular access thrombosis (VAT) is a significant cause of morbidity for hemodialysis patients and results, in part, from decreased access flow potentially caused by venous outflow stenosis. We have previously shown ultrasound dilution (UD) to be a practical and reliable predictor of venous outflow in children receiving hemodialysis. METHODS: The current study is the first to our knowledge to assess the impact of a proactive UD monitoring program upon VAT in pediatric patients. Nine patients experienced 18 VAT over the two-year study. Mean values for variables potentially associated with VAT were compared to values from a size-matched seven patient group without VAT during the study period. VAT rates were compared between the year-before (pre-UD era) and year-after (UD era) UD was initiated. During the latter half of the UD era (rapid referral period), patients with VA flow rate (QAcorr) <650 mL/min/1.73 m2 were referred for balloon angioplasty within 48 hours. RESULTS: Mean QAcorr was lower for patients with subsequent VAT (562 +/- 290 mL/min/1.73 m2) versus patients without VAT (1005 +/- 372 mL/min/1.73 m2; P = 0.02). The VAT rate was significantly lower in the UD era (4.1 VAT/100 patient-months) versus the pre-UD era (11.0 VAT/100 patient-months; P = 0.03). The decrease in VAT rates was caused predominantly in the rapid referral period, where the VAT rate dropped to 0.96 VAT/100 patient-months (P < 0.001). Cost of vascular access management was 65% higher ($1264 vs. $765/patient-month) in the pre-UD era, reflecting the increased cost for treatment of VAT. CONCLUSIONS: Monthly QAcorr <650 mL/min/1.73 m2 is predictive of imminent VAT in children receiving hemodialysis. Prompt referral for angioplasty of VA with QAcorr <650 mL/min/1.73 m2 leads to decreased VAT rates in children.

nPCR assessment and IDPN treatment of malnutrition in pediatric hemodialysis patients.

Very few pediatric studies have monitored nutritional status using normalized protein catabolic rate (nPCR) or treating protein-energy malnutrition (PEM) with intradialytic parenteral nutrition (IDPN). The current study compares nPCR with serum albumin as a marker for nutritional status and examines the effectiveness of IDPN treatment in three malnourished adolescent patients receiving chronic hemodialysis in a pediatric dialysis unit. All patients demonstrated reversal of weight loss and initiation of weight gain within 6 weeks of IDPN initiation. Mean values of monthly percentage weight and percentage body mass index (BMI) change were significantly lower in the pre-IDPN era (-0.61+/-2.70 and -1.3+/-2.7) versus the IDPN treatment period (1.8+/-2.1 and 1.3+/-2.1) ( P<0.02). Two patients attained ideal body weight and IDPN was discontinued after 5 months. Patients required 150% recommended daily allowance to achieve weight and BMI gain. While mean monthly nPCR was significantly lower in the pre-IDPN period versus the IDPN period (1.05+/-0.36 versus 1.35+/-0.37, P<0.05), monthly serum albumin levels were no different before and after IDPN was initiated (3.7+/-0.8 versus 3.8+/-0.6). The current study demonstrates IDPN to be effective therapy for adolescent hemodialysis patients with PEM not correctable by enteral supplementation. nPCR was superior to serum albumin as a nutritional status marker in these malnourished pediatric patients receiving hemodialysis.

Acute and chronic inflammation in pediatric patients receiving hemodialysis.

OBJECTIVES: To assess chronic and acute inflammation in children receiving maintenance hemodialysis. STUDY DESIGN: To assess markers of acute inflammation, serum levels (ELISA) of the cytokines tumor necrosis factor (TNF)-alpha, interleukin (IL)-1beta, IL-10, and IL-6, 3 to 5 mL of serum was obtained from 13 pediatric patients (mean patient weight, 37.0+/-15.2 kg; mean age, 14.6+/-4.6 years) before and 30 minutes and 24 hours after a routine midweek hemodialysis treatment session. Chronic inflammation was assessed by serum C-reactive protein (CRP) levels. RESULTS: Early-response cytokines TNF-alpha at 30 minutes (5.84+/-0.94 to 9.67+/-0.92 pg/mL; P=.002) and 24 hours (5.84+/-0.94 to 9.54+/-1.05 pg/mL; P=.008) and IL-1beta at 30 minutes (17.19+/-2.00 to 26.17+/-1.12 pg/mL; P=.001) and 24 hours (17.19+/-2.00 to 23.01+/-1.13 pg/mL; P=.02) increased significantly after hemodialysis. Later-response cytokines IL-10 and IL-6 activation was not significant. CRP levels were elevated in 10 of 13 patients (mean, 14.7+/-9.5mg/L; range, 7.2-38.8 mg/L) and correlated with dialysis vintage. Baseline IL-6 and IL-10 levels correlated with dialysis vintage and correlated negatively with eqKt/V. CONCLUSIONS: We observed a chronic inflammatory state in pediatric hemodialysis patients not related to the hemodialysis treatment but rather dialysis vintage and hemodialysis adequacy. We suggest that either more frequent dialysis or enhanced cytokine clearance may ameliorate the chronic inflammatory state observed in pediatric patients receiving hemodialysis.