Process evaluation of the RaDIANT community study: a dialysis facility-level intervention to increase referral for kidney transplantation.

BACKGROUND: The Reducing Disparities in Access to kidNey Transplantation Community Study (RaDIANT) was an End-Stage Renal Disease (ESRD) Network 6-developed, dialysis facility-level randomized trial testing the effectiveness of a 1-year multicomponent education and quality improvement intervention in increasing referral for kidney transplant evaluation among selected Georgia dialysis facilities. METHODS: To assess implementation of the RaDIANT intervention, we conducted a process evaluation at the conclusion of the intervention period (January-December 2014). We administered a 20-item survey to the staff involved with transplant education in 67 dialysis facilities randomized to participate in intervention activities. Survey items assessed facility participation in the intervention (fidelity and reach), helpfulness and willingness to continue intervention activities (sustainability), suggestions for improving intervention components (sustainability), and factors that may have influenced participation and study outcomes (context). We defined high fidelity to the intervention as completing 11 or more activities, and high participation in an activity as having at least 75% participation across intervention facilities. RESULTS: Staff from 65 of the 67 dialysis facilities completed the questionnaire, and more than half (50.8%) reported high adherence (fidelity) to RaDIANT intervention requirements. Nearly two-thirds (63.1%) of facilities reported that RaDIANT intervention activities were helpful or very helpful, with 90.8% of facilities willing to continue at least one intervention component beyond the study period. Intervention components with high participation emphasized staff and patient-level education, including in-service staff orientations, patient and family education programs, and patient educational materials. Suggested improvements for intervention activities emphasized addressing financial barriers to transplantation, with financial education materials perceived as most helpful among RaDIANT educational materials. Variation in facility-level fidelity of the RADIANT intervention did not significantly influence the mean difference in proportion of patients referred pre- (2013) and post-intervention (2014). CONCLUSIONS: We found high fidelity to the RaDIANT multicomponent intervention at the majority of intervention facilities, with sustainability of select intervention components at intervention facilities and feasibility for dissemination across ESRD Networks. Future modification of the intervention should emphasize financial education regarding kidney transplantation and amend intervention components that facilities perceive as time-intensive or non-sustainable. TRIAL REGISTRATION: Clinicaltrials.gov number NCT02092727 . Registered 13 Mar 2014 (retrospectively registered).

A Randomized Trial to Reduce Disparities in Referral for Transplant Evaluation.

Georgia has the lowest kidney transplant rates in the United States and substantial racial disparities in transplantation. We determined the effectiveness of a multicomponent intervention to increase referral of patients on dialysis for transplant evaluation in the Reducing Disparities in Access to kidNey Transplantation Community Study (RaDIANT), a randomized, dialysis facility-based, controlled trial involving >9000 patients receiving dialysis from 134 dialysis facilities in Georgia. In December of 2013, we selected dialysis facilities with either low transplant referral or racial disparity in referral. The intervention consisted of transplant education and engagement activities targeting dialysis facility leadership, staff, and patients conducted from January to December of 2014. We examined the proportion of patients with prevalent ESRD in each facility referred for transplant within 1 year as the primary outcome, and disparity in the referral of black and white patients as a secondary outcome. Compared with control facilities, intervention facilities referred a higher proportion of patients for transplant at 12 months (adjusted mean difference [aMD], 7.3%; 95% confidence interval [95% CI], 5.5% to 9.2%; odds ratio, 1.75; 95% CI, 1.36 to 2.26). The difference between intervention and control facilities in the proportion of patients referred for transplant was higher among black patients (aMD, 6.4%; 95% CI, 4.3% to 8.6%) than white patients (aMD, 3.7%; 95% CI, 1.6% to 5.9%; P<0.05). In conclusion, this intervention increased referral and improved equity in kidney transplant referral for patients on dialysis in Georgia; long-term follow-up is needed to determine whether these effects led to more transplants.

Referral for Kidney Transplantation and Indicators of Quality of Dialysis Care: A Cross-sectional Study.

BACKGROUND: Dialysis facility performance measures to improve access to kidney transplantation are being considered. Referral of patients for kidney transplantation evaluation by the dialysis facility is one potential indicator, but limited data exist to evaluate whether referral is associated with existing dialysis facility quality indicators. STUDY DESIGN: Cross-sectional study. SETTING & PARTICIPANTS: 12,926 incident (July 2005 to September 2011) adult (aged 18-69 years) patients treated at 241 dialysis facilities with complete quality indicator information from US national registry data linked to transplantation referral data from all 3 Georgia kidney transplantation centers. FACTORS: Facility performance on dialysis quality indicators (high, intermediate, and low tertiles). OUTCOME: Percentages of patients referred within 1 year of dialysis therapy initiation at dialysis facility. RESULTS: Overall, a median of 25.4% of patients were referred for kidney transplantation within 1 year of dialysis therapy initiation. Higher facility-level referral was associated with better performance with respect to standardized transplantation ratio (high, 28.6%; intermediate, 25.1%; and low, 22.9%; P=0.001) and percentage waitlisted (high, 30.7%; intermediate, 26.8%; and low, 19.2%; P<0.001). Facility-level referral was not associated with indicators of quality of care associated with dialysis therapy initiation, including percentage of incident patients being informed of transplantation options. For most non-transplantation-related indicators of high-quality care, including those capturing mortality, morbidity, and anemia management, better performance was not associated with higher facility-level transplantation referral. LIMITATIONS: Potential ecologic fallacy and residual confounding. CONCLUSIONS: Transplantation referral among patients at dialysis facilities does not appear to be associated with overall quality of dialysis care at the facility. Quality indicators related to kidney transplantation were positively associated with, but not entirely correspondent with, higher percentages of patients referred for kidney transplantation evaluation from dialysis facilities. These results suggest that facility-level referral, which is within the control of the dialysis facility, may provide information about the quality of dialysis care beyond current indicators.

APOL1 renal-risk genotypes associate with longer hemodialysis survival in prevalent nondiabetic African American patients with end-stage renal disease.

Relative to European Americans, evidence supports that African Americans with end-stage renal disease (ESRD) survive longer on dialysis. Renal-risk variants in the apolipoprotein L1 gene (APOL1), associated with nondiabetic nephropathy and less subclinical atherosclerosis, may contribute to dialysis outcomes. Here, APOL1 renal-risk variants were assessed for association with dialytic survival in 450 diabetic and 275 nondiabetic African American hemodialysis patients from Wake Forest and Emory School of Medicine outpatient facilities. Outcomes were provided by the ESRD Network 6-Southeastern Kidney Council Standardized Information Management System. Dates of death, receipt of a kidney transplant, and loss to follow-up were recorded. Outcomes were censored at the date of transplantation or through 1 July 2015. Multivariable Cox proportional hazards models were computed separately in patients with nondiabetic and diabetic ESRD, adjusting for the covariates age, gender, comorbidities, ancestry, and presence of an arteriovenous fistula or graft at dialysis initiation. In nondiabetic ESRD, patients with 2 (vs. 0/1) APOL1 renal-risk variants had significantly longer dialysis survival (hazard ratio 0.57), a pattern not observed in patients with diabetes-associated ESRD (hazard ratio 1.29). Thus, 2 APOL1 renal-risk variants are associated with longer dialysis survival in African Americans without diabetes, potentially relating to presence of renal-limited disease or less atherosclerosis.

Kidney transplant referral practices in southeastern dialysis units.

BACKGROUND: The Southeastern Kidney Transplant Coalition was created in 2010 to improve kidney transplant (KTx) rates in Georgia, North Carolina, and South Carolina. To identify dialysis staff-reported barriers to transplant, the Coalition developed a survey of dialysis providers in the region. METHODS: All dialysis units in the ESRD Network (n = 586) were sent a survey to be completed by the professional responsible for helping patients get transplants. RESULTS: One staff member at almost all (n = 546) of the dialysis units in Network 6 completed the survey (93% response rate). Almost all respondents reported being very comfortable (51.47%) or comfortable (46.89%) discussing the KTx process with patients. Just over half (56%) of facilities reported discussing KTx as a treatment option with patients on an annual basis. Fewer than one quarter of respondents (19%) perceived that more than 50% of their patients were interested in kidney transplant, and most of the staff surveyed (68%) reported that <25% of their dialysis patients completed the evaluation process and been wait-listed for a kidney transplant. CONCLUSION: The survey results provide insight into KTx referral practices in southeastern dialysis units that may be contributing to low KTx rates in this region.

Everybody needs a cheerleader to get a kidney transplant: a qualitative study of the patient barriers and facilitators to kidney transplantation in the Southeastern United States.

BACKGROUND: Kidney transplantation (KTx) disparity is a significant problem in the United States, particularly in the Southeastern region. In response to this phenomenon, the Southeastern Kidney Transplant Coalition was created in 2011 to increase the KTx rate, and to reduce disparities in access to transplantation in the Southeast, by identifying and reducing barriers in the transplant process. METHODS: To determine perceived barriers and facilitators to KTx that dialysis patients in this region experience, we conducted three focus groups with 40 total patients in Georgia, North Carolina, and South Carolina. RESULTS: We identified two novel themes specific to Southeastern dialysis patients that describe the major barriers and facilitators to kidney transplantation: dialysis center approaches to patient education about KTx, and dialysis center advocacy and encouragement for KTx. In addition, themes related to barriers and facilitators of KTx were evident that were previously mentioned in the literature such as age, fear, knowing other patients with good or bad experiences with KTx, distrust of the KTx process equity, financial concerns and medical barriers. CONCLUSIONS: Dialysis providers are encouraged to enhance their delivery of information and active assistance to underserved patients related to KTx.

Dialysis Facility Transplant Philosophy and Access to Kidney Transplantation in the Southeast.

BACKGROUND: Little is known about the impact of dialysis facility treatment philosophy on access to transplant. The aim of our study was to determine the relationship between the dialysis facility transplant philosophy and facility-level access to kidney transplant waitlisting. METHODS: A 25-item questionnaire administered to Southeastern dialysis facilities (n = 509) in 2012 captured the facility transplant philosophy (categorized as 'transplant is our first choice', 'transplant is a great option for some', and 'transplant is a good option, if the patient is interested'). Facility-level waitlisting and facility characteristics were obtained from the 2008-2011 Dialysis Facility Report. Multivariable logistic regression was used to examine the association between the dialysis facility transplant philosophy and facility waitlisting performance (dichotomized using the national median), where low performance was defined as fewer than 21.7% of dialysis patients waitlisted within a facility. RESULTS: Fewer than 25% (n = 124) of dialysis facilities reported 'transplant is our first option'. A total of 131 (31.4%) dialysis facilities in the Southeast were high-performing facilities with respect to waitlisting. Adjusted analysis showed that facilities who reported 'transplant is our first option' were twice (OR 2.0; 95% CI 1.0-3.9) as likely to have high waitlisting performance compared to facilities who reported that 'transplant is a good option, if the patient is interested'. CONCLUSIONS: Facilities with staff who had a more positive transplant philosophy were more likely to have better facility waitlisting performance. Future prospective studies are needed to further investigate if improving the kidney transplant philosophy in dialysis facilities improves access to transplantation.

Variation in Dialysis Facility Referral for Kidney Transplantation Among Patients With End-Stage Renal Disease in Georgia.

IMPORTANCE: Dialysis facilities in the United States are required to educate patients with end-stage renal disease about all treatment options, including kidney transplantation. Patients receiving dialysis typically require a referral for kidney transplant evaluation at a transplant center from a dialysis facility to start the transplantation process, but the proportion of patients referred for transplantation is unknown. OBJECTIVE: To describe variation in dialysis facility-level referral for kidney transplant evaluation and factors associated with referral among patients initiating dialysis in Georgia, the US state with the lowest kidney transplantation rates. DESIGN, SETTING, AND PARTICIPANTS: Examination of United States Renal Data System data from a cohort of 15,279 incident, adult (18-69 years) patients with end-stage renal disease from 308 Georgia dialysis facilities from January 2005 to September 2011, followed up through September 2012, linked to kidney transplant referral data collected from adult transplant centers in Georgia in the same period. MAIN OUTCOMES AND MEASURES: Referral for kidney transplant evaluation within 1 year of starting dialysis at any of the 3 Georgia transplant centers was the primary outcome; placement on the deceased donor waiting list was also examined. RESULTS: The median within-facility percentage of patients referred within 1 year of starting dialysis was 24.4% (interquartile range, 16.7%-33.3%) and varied from 0% to 75.0%. Facilities in the lowest tertile of referral (<19.2%) were more likely to treat patients living in high-poverty neighborhoods (absolute difference, 21.8% [95% CI, 14.1%-29.4%]), had a higher patient to social worker ratio (difference, 22.5 [95% CI, 9.7-35.2]), and were more likely nonprofit (difference, 17.6% [95% CI, 7.7%-27.4%]) compared with facilities in the highest tertile of referral (>31.3%). In multivariable, multilevel analyses, factors associated with lower referral for transplantation, such as older age, white race, and nonprofit facility status, were not always consistent with the factors associated with lower waitlisting. CONCLUSIONS AND RELEVANCE: In Georgia overall, a limited proportion of patients treated with dialysis were referred for kidney transplant evaluation between 2005 and 2011, but there was substantial variability in referral among facilities. Variables associated with referral were not always associated with waitlisting, suggesting that different factors may account for disparities in referral.

Association of U.S. Dialysis facility neighborhood characteristics with facility-level kidney transplantation.

BACKGROUND: Improving access to optimal healthcare may depend on the attributes of neighborhoods where patients receive healthcare services. We investigated whether the characteristics of dialysis facility neighborhoods--where most patients with end-stage renal disease are treated--were associated with facility-level kidney transplantation. METHODS: We examined the association between census tract (neighborhood)-level sociodemographic factors and facility-level kidney transplantation rate in 3,983 U.S. dialysis facilities where kidney transplantation rates were high. Number of kidney transplants and total person-years contributed at the facility level in 2007-2010 were obtained from the Dialysis Facility Report and linked to the census tract data on sociodemographic characteristics from the American Community Survey 2006-2010 by dialysis facility location. We used multivariable Poisson models with generalized estimating equations to estimate the link between the neighborhood characteristics and transplant incidence. RESULTS: Dialysis facilities in the United States were located in neighborhoods with substantially greater proportions of black and poor residents, relative to the national average. Most facility neighborhood characteristics were associated with transplant, with incidence rate ratios (95% CI) for standardized increments (in percentage) of neighborhood exposures of: living in poverty, 0.88 (0.84-0.92), black race, 0.83 (0.78-0.89); high school graduates, 1.22 (1.17-1.26); and unemployed, 0.90 (0.85-0.95). CONCLUSION: Dialysis facility neighborhood characteristics may be modestly associated with facility rates of kidney transplantation. The success of dialysis facility interventions to improve access to kidney transplantation may partially depend on reducing neighborhood-level barriers.

The RaDIANT community study protocol: community-based participatory research for reducing disparities in access to kidney transplantation.

BACKGROUND: The Southeastern United States has the lowest kidney transplant rates in the nation, and racial disparities in kidney transplant access are concentrated in this region. The Southeastern Kidney Transplant Coalition (SEKTC) of Georgia, North Carolina, and South Carolina is an academic and community partnership that was formed with the mission to improve access to kidney transplantation and reduce disparities among African American (AA) end stage renal disease (ESRD) patients in the Southeastern United States. METHODS/DESIGN: We describe the community-based participatory research (CBPR) process utilized in planning the Reducing Disparities In Access to kidNey Transplantation (RaDIANT) Community Study, a trial developed by the SEKTC to reduce health disparities in access to kidney transplantation among AA ESRD patients in Georgia, the state with the lowest kidney transplant rates in the nation. The SEKTC Coalition conducted a needs assessment of the ESRD population in the Southeast and used results to develop a multicomponent, dialysis facility-randomized, quality improvement intervention to improve transplant access among dialysis facilities in GA. A total of 134 dialysis facilities are randomized to receive either: (1) standard of care or "usual" transplant education, or (2) the multicomponent intervention consisting of transplant education and engagement activities targeting dialysis facility leadership, staff, and patients within dialysis facilities. The primary outcome is change in facility-level referral for kidney transplantation from baseline to 12 months; the secondary outcome is reduction in racial disparity in transplant referral. DISCUSSION: The RaDIANT Community Study aims to improve equity in access to kidney transplantation for ESRD patients in the Southeast. TRIAL REGISTRATION: Clinicaltrials.gov number NCT02092727.

Mortality of dialysis patients according to influenza and pneumococcal vaccination status.

BACKGROUND: Data from an immunocompromised subpopulation in which both vaccine recipients and nonrecipients have frequent opportunities for vaccination can help determine the associations between vaccination against seasonal influenza and pneumococcal disease and all-cause mortality. STUDY DESIGN: We surveyed dialysis centers and performed a retrospective analysis of health status at dialysis therapy initiation, vaccination for influenza and pneumococcal disease, laboratory results, and mortality associated with the 2005-2006 influenza season for patients in 3 End-Stage Renal Disease Networks across the United States. SETTING & PARTICIPANTS: Of 1,033 dialysis facilities considered, 903 centers with a total patient population of 54,734 reported vaccination data. Analysis was limited to 36,966 patients on dialysis treatment for at least 1 year as of December 31, 2005. PREDICTOR: Vaccination status. OUTCOMES: OR for all-cause mortality (vaccinated vs unvaccinated patients). RESULTS: The estimated adjusted OR for mortality was significantly less than 1.0 for patient who received either vaccination and was lower for patients who had received both vaccinations than for those who had received either. Survival analysis confirmed these findings. LIMITATIONS: Possible misclassification due to self-report of vaccination for some patients. Lack of vaccination date. CONCLUSIONS: Vaccination against influenza and pneumococcal disease is associated with improved survival in dialysis patients. The 2 vaccinations have independent effects on mortality.

A group-randomized evaluation of a quality improvement intervention to improve influenza vaccination rates in dialysis centers.

BACKGROUND: Patients with end-stage renal disease (ESRD) are at high risk of complications from influenza, but many dialysis centers report <50% influenza immunization coverage. STUDY DESIGN: A group-randomized evaluation of a multicomponent intervention to increase influenza vaccination rates in poorly performing dialysis centers in ESRD Networks 6, 11, and 15. SETTING & PARTICIPANTS: Facilities with the lowest immunization percentages in 2006-2007 were selected from each network and randomly assigned to a standard (n = 39) or intensive intervention (n = 38). INTERVENTION: Standard intervention included a feedback report with comparison to other centers in their network and educational materials for staff and patients. Intensive-intervention centers also received 3 educational seminars, assistance with and review of center-specific action plans, and monthly monitoring of vaccination plan and rates. OUTCOMES: Change in vaccination rate in following year. MEASUREMENTS: Dialysis center records of patient vaccination status. RESULTS: There was an 8.9% (P = 0.04) adjusted mean absolute difference in improvement between intensive- and standard-intervention centers. LIMITATIONS: Some vaccinations were self-reported by patients. The vaccination data form does not have an option for patient data unavailable, which may have caused patients without data to be coded as unvaccinated. CONCLUSIONS: Multicomponent interventions may serve as a successful strategy to increase influenza vaccination rates at poorly performing centers, with a benefit beyond that provided by usual oversight and support.

Hemodialysis treatment center early mortality rates for incident hemodialysis patients are associated with the quality of care prior to starting but not following onset of dialysis.

BACKGROUND: We examined the independent contribution of pre-ESRD (end-stage renal disease) care and care after starting hemodialysis (post-HD) with facility-specific mortality among incident patients. METHODS: We studied 6,217 incident patients treated at 311 dialysis facilities. A pre-ESRD care score was assessed as the sum of quality measures met on the Centers for Medicare and Medicaid Services Form 2728, including predialysis nephrology and dietary care, having a fistula, hemoglobin and serum albumin. A post-HD care score was evaluated by the sum of quality targets attained, including HD adequacy, anemia, serum albumin and hemoglobin measured on an annual quality survey. A fifth post-HD care measure was having obtained an influenza vaccination during the current year. RESULTS: Individual patient mortality was associated with both pre-ESRD (p < 0.001) and post-HD (p < 0.001) care scores. Linear regression models including both pre-ESRD and post-HD care scores showed that a 1-point increase in the pre-ESRD care score resulted in a 0.30 (95% CI: -0.47, -0.12) decreased facility standardized mortality ratio; no association for post-HD care score was noted (-0.11; 95% CI: -0.26, 0.04). CONCLUSION: Pre-ESRD and post-HD care are both strongly associated with individual patient mortality. In contrast, only pre-ESRD care is associated with facility mortality, suggesting that early mortality reflects differences in pre-ESRD care in the community.

Geographic concentration of poverty and arteriovenous fistula use among ESRD patients.

There is substantial geographic variability in both incident and prevalent arteriovenous fistula (AVF) use among patients with ESRD. This study examined the degree to which these variations associate with poverty in the county of a patient's treatment center. We performed a cross-sectional study including 28,135 patients treated by 1127 hemodialysis centers in five ESRD networks (16 states) between June 1, 2005 and May 31, 2006. We used the 2000 U.S. Census to categorize county-level poverty and ascertained incident AVF use from the Medicare CMS 2728 form. We calculated the 30-month slope of change in AVF prevalence from monthly facility reports collected between 2003 and 2005. More than 33% of treatment centers were located in high-poverty counties. County poverty inversely associated with incident AVF use (P for trend = 0.001). In contrast, substantial increases in prevalent AVF rates from 30.9 to 38.6% (P < 0.001) among treatment centers did not associate with county poverty (P = 0.9519). In conclusion, the concentration of poverty in the county where a treatment is located associates with incident AVF use by patients with ESRD but not with subsequent improvement in AVF use among prevalent patients. These results suggest that the Medicare ESRD program may mitigate poverty effects on AVF use.

Individuals with a family history of ESRD are a high-risk population for CKD: implications for targeted surveillance and intervention activities.

Activities intended to improve the detection, treatment, and control of chronic kidney disease (CKD) should be incorporated into existing health care systems and targeted to high-risk populations to avoid redundancy and waste of resources. One high-risk population consists of first- or second-degree family members of patients with end-stage renal disease (ESRD), who are 2 to 3 times as likely to have incident ESRD, have high rates of impaired kidney function and undetected and uncontrolled high blood pressure, and are more likely to be obese. These individuals usually are unaware of their underlying CKD and may discount their own risk of ESRD. The ESRD Network 6 Family History Project shows that the ESRD Networks, which constitute a national CKD surveillance system for patients with stage 5 CKD, may be an existing resource that can be used to identify relatives of incident patients with ESRD and provide these families with information about CKD. Nationally available resources have been developed by the National Kidney Disease Education Program for use with these at-risk families. Individuals interested in population-based CKD control activities should be aware of and use these resources.

Association of standing-order policies with vaccination rates in dialysis clinics: a US-based cross-sectional study.

BACKGROUND: Patients with end-stage renal disease are at increased risk of morbidity and mortality because of infection. Quality improvement efforts for this patient population include assessment of institutional policies and practices that may increase vaccination rates for influenza, hepatitis B, and pneumococcal disease. STUDY DESIGN: A survey of vaccination practices, beliefs, and attitudes was sent to all dialysis centers in End-Stage Renal Disease Networks 6, 11, and 15. SETTING & PARTICIPANTS: Of 1,052 dialysis facilities considered, 683 returned the survey, reported vaccination rates for 2005 to 2006, and had 20 or more patients. PREDICTOR OR FACTOR: Standing-order policy of the dialysis facility, categorized as facility-wide orders, preprinted admission orders for each patient (chart orders), physician-specific orders, and individual orders. OUTCOMES: Vaccination rates for influenza, hepatitis B (full or partial series), hepatitis B, and pneumococcal vaccine. MEASUREMENTS: Patient vaccination, given at or outside the center. RESULTS: Overall vaccination rates were 76% +/- 18% (SD) for influenza, 73% +/- 22% for hepatitis B full or partial series, 62% +/- 25% for hepatitis B full series, and 44% +/- 34% for pneumococcal vaccine. Compared with individual orders, facility-wide standing orders and chart orders were not associated with greater vaccination rates for influenza (0.4%; confidence interval, -4 to 5; and 1.27%; confidence interval, -3 to 5, respectively), but were associated with greater vaccination rates for hepatitis B full or partial series (9%; confidence interval, 3 to 15; and 11%; confidence interval, 5 to 17, respectively), hepatitis B full series (11%; confidence interval, 4 to 17; and 13%; confidence interval, 7 to 19, respectively), and pneumococcal disease (21%; confidence interval, 14 to 29; and 20%; confidence interval, 13 to 27, respectively). LIMITATIONS: Data are cross-sectional, and vaccinations outside the center were self-reported. CONCLUSIONS: Existing facility-wide or chart-based order programs may be effective in promoting vaccination against hepatitis B and pneumococcal disease.

Effect of community characteristics on familial clustering of end-stage renal disease.

BACKGROUND: Lower socioeconomic status is generally associated with an increased risk of end-stage renal disease (ESRD). The relationship between community characteristics reflecting socioeconomic status and familial aggregation of common forms of ESRD has not been studied. METHODS: Demographic data and family history of ESRD were collected from 23,880 incident dialysis patients in ESRD Network 6 between 1995 and 2003. Addresses were geocoded and linked to the 2000 census 5-digit zip code-level database that includes community demographic, social and economic characteristics. Clustering of patients having a family history of ESRD at the community level was accounted for using a generalized estimating equations (GEE) model. Multivariate analysis estimated associations between family history of ESRD and community-level characteristics. RESULTS: Twenty-three percent of patients reported a family history of ESRD. After adjusting for individual demographic characteristics, multivariate analyses failed to reveal statistically significant relationships between a family history of ESRD and indicators of community socioeconomic status such as median household income, percentage high school graduates, percentage vacant housing units or ethnic composition. CONCLUSIONS: Although select community measures of lower socioeconomic status may contribute to the familial clustering of ESRD, non-socioeconomic factors, potentially inherited, appear to be more important contributors to familial aggregation of the common forms of ESRD.

Discrepancy between Medical Evidence Form 2728 and renal biopsy for glomerular diseases.

BACKGROUND AND OBJECTIVES: The United States Renal Data System (USRDS) is a commonly utilized database for epidemiologic research of ESRD patients. USRDS uses Medical Evidence Form 2728 to collect medical information about ESRD patients. The validity of the Form 2728 "primary cause of renal failure" field for glomerular diseases has not been evaluated, although inconsistencies between Form 2728 information and medical records have been documented previously with respect to comorbidities. DESIGN, SETTING, PARTICIPANTS, & MEASUREMENTS: Form 2728 information was linked with renal biopsy results from the Glomerular Disease Collaborative Network (GDCN) for 217 patients with biopsy-confirmed glomerular diseases who had reached ESRD. Biopsy results were compared with the Form 2728 "primary cause of renal failure" field. Diseases were considered individually, and also categorized into commonly used disease groups. Percentage of agreement and disease-specific measures of validity were calculated. RESULTS: Overall agreement between renal biopsy and Form 2728 was low (14.8% overall, 23.0% when categorized). Agreement was better after Form 2728 was revised in 1995 (10.0% before versus 23.2% after overall). The cause of ESRD field was left blank in 57% of the forms submitted for glomerular disease patients. Individual glomerular diseases had very low specificities, but tended to have high positive predictive values. CONCLUSIONS: Form 2728 does not accurately reflect the renal pathology diagnosis as captured by biopsy. The large degree of missing data and misclassification should be of concern to those performing epidemiologic research using Form 2728 information on glomerular diseases.

Population-based screening for family history of end-stage renal disease among incident dialysis patients.

BACKGROUND: We determined the familial aggregation of end-stage renal disease (ESRD) in a large, population-based sample of incident ESRD cases to assess the feasibility of developing a targeted screening and prevention program directed at members of families at high risk for kidney disease. METHODS: Between January 1, 1995, and December 31, 2003, incident dialysis patients in ESRD Network 6 facilities were asked to complete a voluntary questionnaire on family history (FH) of ESRD. Cases with ESRD attributed to Mendelian diseases or urologic causes were excluded. FH was considered present if first- or second-degree relatives had ESRD. De-identified FH data were collated with demographic data at dialysis initiation. RESULTS: More than 46% of eligible patients (25,883/55,929) provided FH information and 22.8% (5,901/25,883) of these reported having a FH of ESRD. FH of ESRD was positively associated with female gender, earlier age at ESRD onset, and primary cause of ESRD, and negatively associated with white race. FH associations with age, race, gender, and primary cause of renal failure remained statistically significant after simultaneous adjustment in a multivariate logistic regression model. CONCLUSIONS: Approximately 23% of incident dialysis patients have close relatives with ESRD. Far more are likely to have relatives with clinically silent proteinuria or chronic kidney disease (CKD), both risk factors for future cardiovascular events and ESRD. Physicians caring for patients with CKD should be aware of the marked familial aggregation of ESRD and consider focusing screening efforts on high-risk family members in an attempt to slow the exponential growth rate of kidney disease.

Impact of birth weight on familial aggregation of end-stage renal disease.

BACKGROUND: Birth weight (BW) and family history (FH) of end-stage renal disease (ESRD) have been shown to have an independent association with development of subsequent ESRD. This study was undertaken to determine the effects of BW (low BW suggesting a congenital reduction in functional nephron number) on the observed familial aggregation of ESRD. METHODS: Cases were identified from the ESRD Network 6 "Family History of ESRD" Study and BW was determined from birth certificate records maintained at the Office of Vital Records, South Carolina Department of Health and Environmental Control. BW and FH of ESRD data were available in 387 patients who initiated dialysis therapy between 1993 and 1997. Multiple logistic regression analysis was performed to assess the risk of low BW (<2,500 g) and high BW (> or =4,000 g) on FH of ESRD. RESULTS: A FH of ESRD in first or second-degree relatives was present in 24% of cases. No significant differences were observed in the frequency of a positive FH of ESRD in those with low BW compared to those with normal BW. There was a significant reduction in the prevalence of a FH of ESRD in those with high BW, compared to those with a normal BW (risk ratio 0.32, CI 0.11-0.94). CONCLUSION: The clustering of either high BW or low BW within multiply affected ESRD families does not account for the observed familial aggregation of ESRD. In addition, high BW was associated with a reduced familial aggregation of ESRD.