ImportanceSARS-CoV-2 infection is associated with persistent, relapsing, or new symptoms or other health effects occurring after acute infection, termed postacute sequelae of SARS-CoV-2 infection (PASC), also known as long COVID. Characterizing PASC requires analysis of prospectively and uniformly collected data from diverse uninfected and infected individuals.ObjectiveTo develop a definition of PASC using self-reported symptoms and describe PASC frequencies across cohorts, vaccination status, and number of infections.Design, Setting, and ParticipantsProspective observational cohort study of adults with and without SARS-CoV-2 infection at 85 enrolling sites (hospitals, health centers, community organizations) located in 33 states plus Washington, DC, and Puerto Rico. Participants who were enrolled in the RECOVER adult cohort before April 10, 2023, completed a symptom survey 6 months or more after acute symptom onset or test date. Selection included population-based, volunteer, and convenience sampling.ExposureSARS-CoV-2 infection.Main Outcomes and MeasuresPASC and 44 participant-reported symptoms (with severity thresholds).ResultsA total of 9764 participants (89% SARS-CoV-2 infected; 71% female; 16% Hispanic/Latino; 15% non-Hispanic Black; median age, 47 years [IQR, 35-60]) met selection criteria. Adjusted odds ratios were 1.5 or greater (infected vs uninfected participants) for 37 symptoms. Symptoms contributing to PASC score included postexertional malaise, fatigue, brain fog, dizziness, gastrointestinal symptoms, palpitations, changes in sexual desire or capacity, loss of or change in smell or taste, thirst, chronic cough, chest pain, and abnormal movements. Among 2231 participants first infected on or after December 1, 2021, and enrolled within 30 days of infection, 224 (10% [95% CI, 8.8%-11%]) were PASC positive at 6 months.Conclusions and RelevanceA definition of PASC was developed based on symptoms in a prospective cohort study. As a first step to providing a framework for other investigations, iterative refinement that further incorporates other clinical features is needed to support actionable definitions of PASC.

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 StatesRenal 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 MEASURESReferral 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. RESULTSThe 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 RELEVANCEIn 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.

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%; <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.

We previously developed a mobile- and web-based decision aid (iChoose Kidney) that displays individualized risk estimates of survival and mortality, for the treatment modalities of dialysis versus kidney transplantation. We examined the effect of iChoose Kidney on change in transplant knowledge and access to transplant in a randomized controlled trial among patients presenting for evaluation in three transplant centers. A total of 470 patients were randomized to standard transplantation education (control) or standard education plus iChoose Kidney (intervention). Change in transplant knowledge (primary outcome) among intervention versus control patients was assessed using nine items in pre- and postevaluation surveys. Access to transplant (secondary outcome) was defined as a composite of waitlisting, living donor inquiries, or transplantation. Among 443 patients (n = 226 intervention; n = 216 control), the mean knowledge scores were 5.1 ± 2.1 pre- and 5.8 ± 1.9 postevaluation. Change in knowledge was greater among intervention (1.1 ± 2.0) versus control (0.4 ± 1.8) patients (P < .0001). Access to transplantation was similar among intervention (n = 168; 74.3%) versus control patients (n = 153; 70.5%; P = .37). The iChoose Kidney decision aid improved patient knowledge at evaluation, but did not impact transplant access. Future studies should examine whether combining iChoose Kidney with other interventions can increase transplantation. (Clinicaltrials.gov NCT02235571).

IMPORTANCE For-profit (vs nonprofit) dialysis facilities have historically had lower kidney transplantation rates, but it is unknown if the pattern holds for living donor and deceased donor kidney transplantation, varies by facility ownership, or has persisted over time in a nationally representative population. OBJECTIVE To determine the association between dialysis facility ownership and placement on the deceased donor kidney transplantation waiting list, receipt of a living donor kidney transplant, or receipt of a deceased donor kidney transplant. DESIGN, SETTING, AND PARTICIPANTS Retrospective cohort study that included 1 585 947 patients treated at 6512 US dialysis facilities. Adult patients with incident end-stage kidney disease from the US Renal Data System (2000-2016) were linked with facility ownership (Dialysis Facility Compare) and characteristics (Dialysis Facility Report). EXPOSURES The primary exposure was dialysis facility ownership, which was categorized as nonprofit small chains, nonprofit independent facilities, for-profit large chains (>1000 facilities), for-profit small chains (<1000 facilities), and for-profit independent facilities. MAIN OUTCOMES AND MEASURES Access to kidney transplantation was defined as time from initiation of dialysis to placement on the deceased donor kidney transplantation waiting list, receipt of a living donor kidney transplant, or receipt of a deceased donor kidney transplant. Cumulative incidence differences and multivariable Cox models assessed the association between dialysis facility ownership and each outcome. RESULTS Among 1 585 947 patients, the median age was 65 years (interquartile range, 54-75 years), with 55.8% male, and 28.4% non-Hispanic black patients. Eighty-eight percent of patients received care at a for-profit dialysis facility. A total of 115 650 patients (7.3%) received care at 435 nonprofit small chain facilities; 66 539 (4.2%) at 325 nonprofit independent facilities; 527 458 (33.3%) at 2239 facilities of large for-profit chain 1; 525 997 (33.2%) at 2082 facilities of large for-profit chain 2; 245 633 (15.5%) at 997 for-profit small chain facilities; and 104 670 (6.6%) at 434 for-profit independent facilities. During the study period, 230 202 patients (14.5%) were placed on the deceased donor waiting list, 39 767 (2.5%) received a living donor kidney transplant, and 88 431 (5.6%) received a deceased donor kidney transplant. For-profit facilities had lower 5-year cumulative incidence differences for each outcome vs nonprofit facilities (deceased donor waiting list: −2.6% [95% CI, −2.8% to −2.4%]; receipt of a living donor kidney transplant: −0.9% [95% CI, −1.0% to −0.8%]; and receipt of a deceased donor kidney transplant: −1.4% [95% CI, −1.5% to −1.3%]). Adjusted Cox analyses showed lower relative rates for each outcome among patients treated at all for-profit vs all nonprofit dialysis facilities: deceased donor waiting list (hazard ratio [HR], 0.87 [95% CI, 0.86 to 0.88]); receipt of a living donor kidney transplant (HR, 0.82 [95% CI, 0.80 to 0....

BackgroundThe 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/DesignWe 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.DiscussionThe RaDIANT Community Study aims to improve equity in access to kidney transplantation for ESRD patients in the Southeast.Trial registrationClinicaltrials.gov number NCT02092727.

BackgroundKidney 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.MethodsTo 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.ResultsWe 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.ConclusionsDialysis providers are encouraged to enhance their delivery of information and active assistance to underserved patients related to KTx.Electronic supplementary materialThe online version of this article (doi:10.1186/s12882-016-0326-3) contains supplementary material, which is available to authorized users.

Background Racial disparities persist in access to kidney transplantation. Racial differences in preemptive referral, or referral prior to dialysis start, may explain this discrepancy. Methods Patient-level data on kidney transplant referrals (2005–2012) from all Georgia transplant centers were linked to the United States Renal Data System to examine racial disparities in preemptive referral, waitlisting, and living donor transplant. Adjusted logistic regression and Cox proportional hazard models determined the associations between race (African American vs. white) and preemptive referral, and placement on the waitlist or receipt of a living donor kidney, respectively. Results Among 7,752 adults referred for transplant evaluation, 20.38% (n=1,580) were preemptively referred. The odds of African Americans being preemptively referred for transplant evaluation were 37% (OR=0.63; (95% CI: 0.55 0.71)) lower than whites. Among preemptively referred patients, there was no racial difference (African Americans compared to whites HR=0.96; (95% CI 0.88, 1.04)) in waitlisting. However, African Americans were 70% less likely than whites to receive a living donor transplant (HR=0.30; (95% CI: 0.21, 0.42)). Conclusion Racial disparities in transplant receipt may be partially explained by disparities in preemptive referral. Interventions to reduce racial disparities in kidney transplant access may need to be targeted earlier in the disease process.