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1.
Am J Epidemiol ; 2024 Apr 06.
Article in English | MEDLINE | ID: mdl-38583932

ABSTRACT

Administrative claims databases often do not capture date or fact of death, so studies using these data may inappropriately treat death as a censoring event-equivalent to other withdrawal reasons-rather than a competing event. We examined 1-, 3-, and 5-year inverse-probability-of-treatment-weighted cumulative risks of a composite cardiovascular outcome among 34,527 initiators of telmisartan (exposure) and ramipril (referent) ages ≥55 in Optum claims from 2003 to 2020. Differences in cumulative risks of the cardiovascular endpoint due to censoring of death (cause-specific), as compared to treating death as a competing event (sub-distribution), increased with greater follow-up time and older age, where event and mortality risks were higher. Among ramipril users (selected results), 5-year cause-specific and sub-distribution cumulative risk estimates per 100, respectively, were 16.4 (95% CI 15.3, 17.5) and 16.2 (95% CI 15.1, 17.3) among ages 55-64 (difference=0.2) and were 43.2 (95% CI 41.3, 45.2) and 39.7 (95% CI 37.9, 41.4) among ages ≥75 (difference=3.6). Plasmode simulation results demonstrated the differences in cause-specific versus sub-distribution cumulative risks to increase with increasing mortality rate. We suggest researchers consider the cohort's baseline mortality risk when deciding whether real-world data with incomplete death information can be used without concern.

2.
Am J Transplant ; 24(2): 190-212, 2024 Feb.
Article in English | MEDLINE | ID: mdl-37704059

ABSTRACT

The Organ Procurement and Transplantation Network conducts a robust death verification process when augmenting the United States transplant registry with external sources of data. Process enhancements added over 35,000 externally verified deaths across waitlist candidates and transplant recipients for all organs beginning in April 2022. Ninety-four percent of added posttransplant deaths occurred beyond 5 years posttransplant, and over 74% occurred beyond 10 years. Deceased donor solid organ recipients transplanted from January 1, 2010, through October 31, 2020, were analyzed from January and July 2022 Organ Procurement and Transplantation Network Standard Transplant Analysis and Research and the Scientific Registry of Transplant Recipients Standard Analysis Files to quantify the impact of including vs excluding unverified deaths (not releasable to researchers) on posttransplant patient survival estimates. Across all organs, 1- and 5-year posttransplant survival rates were not substantially impacted; meaningful differences were observed in 10-year survival among kidney recipients. These findings bear important implications for anyone who utilized transplant registry data to examine long-term outcomes prior to the updated verification process. Users of transplant surveillance data should interpret results of long-term outcomes cautiously, particularly differences across subpopulations, and the transplant community should identify ways to improve data quality and minimize the reporting burden on transplant institutions.


Subject(s)
Tissue and Organ Procurement , Humans , United States/epidemiology , Registries , Transplant Recipients , Survival Rate , Tissue Donors
3.
Lupus ; 33(1): 48-57, 2024 Jan.
Article in English | MEDLINE | ID: mdl-38019182

ABSTRACT

OBJECTIVE: For the majority of patients with lupus nephritis-related end-stage kidney disease (LN-ESKD), kidney transplant is associated with better outcomes than dialysis. Access to kidney transplant requires an initial referral to a transplant center and medical evaluation prior to waitlisting. The study's objective was to examine access to these early steps in the kidney transplant process among patients with LN-ESKD. METHODS: Adults who began treatment for ESKD in the Southeast, Northeast, New York, or Ohio River Valley U.S. regions from 1/1/2012 to 12/31/2019, followed through 6/30/2021, were identified from the United States Renal Data System. Referral and evaluation start data were collected from 28 of 48 transplant centers across these regions. The exposure was primary cause of ESKD (LN-ESKD vs other-ESKD). The outcomes were referral and evaluation start at a transplant center. Cox models quantified the association between LN-ESKD (vs other-ESKD) and referral and evaluation start. RESULTS: Among 192,318 patients initiating treatment for ESKD, 0.4% had LN-ESKD. Over half (58%) of LN-ESKD patients were referred before study end, and among those referred, 66% started the evaluation. In adjusted analyses, patients with LN-ESKD were referred (HR: 1.09, 95% CI: 0.99, 1.19) and started the transplant evaluation (HR: 1.13, 95% CI: 1.00, 1.28) at a higher rate than patients with other-ESKD. Among referred patients with LN-ESKD, the median time from ESKD start to referral was 2.9 months (IQR: <1 to 11.7 months), which is similar to patients with other-ESKD (median 2.6 months, IQR: <1 to 8.8 months). CONCLUSIONS: Among incident patients with ESKD, having a primary diagnosis of LN-ESKD versus other-ESKD is associated with higher rates of early transplant access outcomes. Despite this, patients with LN-ESKD (vs other-ESKD) are less likely to be preemptively referred (i.e., referred prior to ESKD start) for kidney transplant. While providers may no longer be delaying the early steps in the kidney transplantation process among this patient population, there is still room for improvement in the rates of preemptive referral. Access to kidney transplant referral prior to ESKD could result in increased transplant rates and better transplant outcomes for patients with LN-ESKD.


Subject(s)
Kidney Failure, Chronic , Kidney Transplantation , Lupus Erythematosus, Systemic , Lupus Nephritis , Adult , Humans , United States , Kidney Transplantation/adverse effects , Lupus Nephritis/complications , Lupus Nephritis/surgery , Lupus Nephritis/diagnosis , Lupus Erythematosus, Systemic/complications , Kidney Failure, Chronic/etiology , Kidney Failure, Chronic/surgery , Kidney Failure, Chronic/epidemiology , Referral and Consultation , Kidney
4.
Acta Haematol ; 2024 May 10.
Article in English | MEDLINE | ID: mdl-38735288

ABSTRACT

INTRODUCTION: Most multiple myeloma (MM) patients experience cytopenias, likely driven by both disease and treatment-related factors. Immunomodulatory agents (IMiDs), which form the backbone of most anti-myeloma regimens, are known to cause higher grade cytopenias. In this context, the impact of sequential IMiD treatments on cytopenia risk is unknown. METHODS: We evaluated the cumulative risks of severe cytopenias following second line of therapy (LOT) initiation in 5573 MM patients in the Flatiron Health database. Patients for whom both LOTs 1 and 2 contained IMiDs were considered "sequentially exposed"; those for whom neither contained IMiDs were "never exposed." RESULTS: For the neutropenia outcome, compared to the never exposed, the sequentially exposed had the highest 1-year risk (risk difference [RD] 12%), followed by those only recently exposed during LOT 2 (RD 8%), then by those with only past exposure during LOT 1 (RD 5%). A similar pattern was observed for leukopenia, but no meaningful differences were observed for anemia or thrombocytopenia. The associations between sequential exposure, versus never, with neutropenia and leukopenia were even stronger among those with a recent cytopenia history. CONCLUSION: Results suggest that sequential exposure to IMiDs is a risk factor for higher grade cytopenias. These findings have profound clinical implications in choosing newer LOTs with potential risks of cytopenia.

5.
J Am Soc Nephrol ; 34(11): 1863-1874, 2023 11 01.
Article in English | MEDLINE | ID: mdl-37535362

ABSTRACT

SIGNIFICANCE STATEMENT: Effects of reduced access to external data by transplant registries to improve accuracy and completeness of the collected data are compounded by different data management processes at three US organizations that maintain kidney transplant-related datasets. This analysis suggests that the datasets have large differences in reported outcomes that vary across different subsets of patients. These differences, along with recent disclosure of previously missing outcomes data, raise important questions about completeness of the outcome measures. Differences in recorded deaths seem to be increasing in recent years, reflecting the adverse effects of restricted access to external data sources. Although these registries are invaluable sources for the transplant community, discrepancies and incomplete reporting risk undermining their value for future analyses, particularly when used for developing national transplant policy or regulatory measures. BACKGROUND: Central to a transplant registry's quality are accuracy and completeness of the clinical information being captured, especially for important outcomes, such as graft failure or death. Effects of more limited access to external sources of death data for transplant registries are compounded by different data management processes at the United Network for Organ Sharing (UNOS), the Scientific Registry of Transplant Recipients (SRTR), and the United States Renal Data System (USRDS). METHODS: This cross-sectional registry study examined differences in reported deaths among kidney transplant candidates and recipients of kidneys from deceased and living donors in 2000 through 2019 in three transplant datasets on the basis of data current as of 2020. We assessed annual death rates and survival estimates to visualize trends in reported deaths between sources. RESULTS: The UNOS dataset included 77,605 deaths among 315,346 recipients and 61,249 deaths among 275,000 nonpreemptively waitlisted candidates who were never transplanted. The SRTR dataset included 87,149 deaths among 315,152 recipients and 60,042 deaths among 259,584 waitlisted candidates. The USRDS dataset included 89,515 deaths among 311,955 candidates and 63,577 deaths among 238,167 waitlisted candidates. Annual death rates among the prevalent transplant population show accumulating differences across datasets-2.31%, 4.00%, and 4.03% by 2019 from UNOS, SRTR, and USRDS, respectively. Long-term survival outcomes were similar among nonpreemptively waitlisted candidates but showed more than 10% discordance between USRDS and UNOS among transplanted patients. CONCLUSIONS: Large differences in reported patient outcomes across datasets seem to be increasing, raising questions about their completeness. Understanding the differences between these datasets is essential for accurate, reliable interpretation of analyses that use these data for policy development, regulatory oversight, and research. PODCAST: This article contains a podcast at https://dts.podtrac.com/redirect.mp3/www.asn-online.org/media/podcast/JASN/2023_10_24_JASN0000000000000194.mp3.


Subject(s)
Kidney Transplantation , Tissue and Organ Procurement , Humans , United States/epidemiology , Cross-Sectional Studies , Registries , Living Donors , Graft Survival , Tissue Donors
6.
JAMA ; 331(2): 124-131, 2024 01 09.
Article in English | MEDLINE | ID: mdl-38193961

ABSTRACT

Importance: The End-Stage Renal Disease Treatment Choices (ETC) model randomly selected 30% of US dialysis facilities to receive financial incentives based on their use of home dialysis, kidney transplant waitlisting, or transplant receipt. Facilities that disproportionately serve populations with high social risk have a lower use of home dialysis and kidney transplant raising concerns that these sites may fare poorly in the payment model. Objective: To examine first-year ETC model performance scores and financial penalties across dialysis facilities, stratified by their incident patients' social risk. Design, Setting, and Participants: A cross-sectional study of 2191 US dialysis facilities that participated in the ETC model from January 1 through December 31, 2021. Exposure: Composition of incident patient population, characterized by the proportion of patients who were non-Hispanic Black, Hispanic, living in a highly disadvantaged neighborhood, uninsured, or covered by Medicaid at dialysis initiation. A facility-level composite social risk score assessed whether each facility was in the highest quintile of having 0, 1, or at least 2 of these characteristics. Main Outcomes and Measures: Use of home dialysis, waitlisting, or transplant; model performance score; and financial penalization. Results: Using data from 125 984 incident patients (median age, 65 years [IQR, 54-74]; 41.8% female; 28.6% Black; 11.7% Hispanic), 1071 dialysis facilities (48.9%) had no social risk features, and 491 (22.4%) had 2 or more. In the first year of the ETC model, compared with those with no social risk features, dialysis facilities with 2 or more had lower mean performance scores (3.4 vs 3.6, P = .002) and lower use of home dialysis (14.1% vs 16.0%, P < .001). These facilities had higher receipt of financial penalties (18.5% vs 11.5%, P < .001), more frequently had the highest payment cut of 5% (2.4% vs 0.7%; P = .003), and were less likely to achieve the highest bonus of 4% (0% vs 2.7%; P < .001). Compared with all other facilities, those in the highest quintile of treating uninsured patients or those covered by Medicaid experienced more financial penalties (17.4% vs 12.9%, P = .01) as did those in the highest quintile in the proportion of patients who were Black (18.5% vs 12.6%, P = .001). Conclusions: In the first year of the Centers for Medicare & Medicaid Services' ETC model, dialysis facilities serving higher proportions of patients with social risk features had lower performance scores and experienced markedly higher receipt of financial penalties.


Subject(s)
Healthcare Disparities , Kidney Failure, Chronic , Reimbursement, Incentive , Renal Dialysis , Self Care , Social Determinants of Health , Aged , Female , Humans , Male , Black or African American/statistics & numerical data , Black People/statistics & numerical data , Cross-Sectional Studies , Healthcare Disparities/economics , Healthcare Disparities/ethnology , Healthcare Disparities/statistics & numerical data , Hispanic or Latino/statistics & numerical data , Kidney Failure, Chronic/economics , Kidney Failure, Chronic/epidemiology , Kidney Failure, Chronic/ethnology , Kidney Failure, Chronic/therapy , Kidney Transplantation/statistics & numerical data , Medicaid/economics , Medicaid/statistics & numerical data , Medically Uninsured/statistics & numerical data , Models, Economic , Reimbursement, Incentive/economics , Reimbursement, Incentive/statistics & numerical data , Renal Dialysis/economics , Renal Dialysis/methods , Renal Dialysis/statistics & numerical data , Social Determinants of Health/economics , Social Determinants of Health/ethnology , Social Determinants of Health/statistics & numerical data , United States/epidemiology , Vulnerable Populations/statistics & numerical data , Waiting Lists , Self Care/economics , Self Care/methods , Self Care/statistics & numerical data
7.
Am J Transplant ; 23(9): 1401-1410, 2023 09.
Article in English | MEDLINE | ID: mdl-37302576

ABSTRACT

We aimed to identify variations in liver transplant access across transplant referral regions (TRRs), accounting for differences in population characteristics and practice environments. Adult end-stage liver disease (ESLD) deaths and liver waitlist additions from 2015 to 2019 were included. The primary outcome was listing-to-death ratio (LDR). We modeled the LDR as a continuous variable and obtained adjusted LDR estimates for each TRR, accounting for clinical and demographic characteristics of ESLD decedents, socioeconomic and health care environment within the TRR, and characteristics of the transplant environment. The overall mean LDR was 0.24 (range: 0.10-0.53). In the final model, proportion of patients living in poverty and concentrated poverty was negatively associated with LDR; organ donation rate was positively associated with LDR. The R2 was 0.60, indicating that 60% of the variability in LDR was explained by the model. Approximately 40% of this variation remained unexplained and may be due to transplant center behaviors amenable to intervention to improve access to care for patients with ESLD.


Subject(s)
End Stage Liver Disease , Liver Transplantation , Tissue and Organ Procurement , Adult , Humans , United States/epidemiology , Retrospective Studies , End Stage Liver Disease/surgery , End Stage Liver Disease/epidemiology , Waiting Lists
8.
Am J Transplant ; 23(5): 608-610, 2023 05.
Article in English | MEDLINE | ID: mdl-36740191

ABSTRACT

The 2022 Scientific Registry of Transplant Recipients Consensus Conference "People Driven Transplant Metrics" offered an opportunity for a diverse group of stakeholders in the solid organ transplant community to exchange ideas about what information and metrics are important to different stakeholders. Participating patients and family members called on the transplant community to cease using the term "discards" to refer to donated organs that are not transplanted.


Subject(s)
Kidney Transplantation , Organ Transplantation , Tissue and Organ Procurement , Humans , Tissue Donors , Donor Selection
9.
Am J Transplant ; 23(10): 1561-1569, 2023 10.
Article in English | MEDLINE | ID: mdl-37453485

ABSTRACT

Predicting long-term kidney allograft failure is an unmet need for clinical care and clinical trial optimization in children. We aimed to validate a kidney allograft failure risk prediction system in a large international cohort of pediatric kidney transplant recipients. Patients from 20 centers in Europe and the United States, transplanted between 2004 and 2017, were included. Allograft assessment included estimated glomerular filtration rate, urine protein-to-creatinine ratio, circulating antihuman leukocyte antigen donor-specific antibody, and kidney allograft histology. Individual predictions of allograft failure were calculated using the integrative box (iBox) system. Prediction performances were assessed using discrimination and calibration. The allograft evaluations were performed in 706 kidney transplant recipients at a median time of 9.1 (interquartile range, 3.3-19.2) months posttransplant; mean estimated glomerular filtration rate was 68.7 ± 28.1 mL/min/1.73 m2, and median urine protein-to-creatinine ratio was 0.1 (0.0-0.4) g/g, and 134 (19.0%) patients had antihuman leukocyte antigen donor-specific antibodies. The iBox exhibited accurate calibration and discrimination for predicting the outcomes up to 10 years after evaluation, with a C-index of 0.81 (95% confidence interval, 0.75-0.87). This study confirms the generalizability of the iBox to predict long-term kidney allograft failure in children, with performances similar to those reported in adults. These results support the use of the iBox to improve patient monitoring and facilitate clinical trials in children.


Subject(s)
Kidney Transplantation , Renal Insufficiency , Adult , Humans , Child , United States , Kidney Transplantation/adverse effects , Creatinine/urine , Transplantation, Homologous , Kidney , Glomerular Filtration Rate , Transplant Recipients , Allografts
10.
Am J Transplant ; 23(7): 875-890, 2023 07.
Article in English | MEDLINE | ID: mdl-36958628

ABSTRACT

In July 2022, the Scientific Registry of Transplant Recipients (SRTR) hosted an innovative, multistakeholder consensus conference to identify information and metrics desired by stakeholders in the transplantation system, including patients, living donors, caregivers, deceased donor family members, transplant professionals, organ procurement organization professionals, payers, and regulators. Crucially, patients, caregivers, living donors, and deceased donor family members were included in all aspects of this conference, including serving on the planning committee, participating in preconference focus groups and learning sessions, speaking at the conference, moderating conference sessions and breakout groups, and shaping the conclusions. Patients constituted 24% of the meeting participants. In this report, we document the proceedings and enumerate 160 recommendations, 10 of which have been highly prioritized. SRTR will use the recommendations to develop new presentations of information and metrics requested by stakeholders to support informed decision-making.


Subject(s)
Tissue and Organ Procurement , Transplants , Humans , Transplant Recipients , Benchmarking , Registries , Tissue Donors , Living Donors
11.
J Pediatr ; 261: 113593, 2023 10.
Article in English | MEDLINE | ID: mdl-37399917

ABSTRACT

OBJECTIVE: To determine the healthcare costs and use burden of pediatric feeding disorder after congenital heart surgery. STUDY DESIGN: A retrospective, population-based cohort study using claims data (2009-2018) was performed. Participants include patients aged 0-18 years who had undergone congenital heart surgery and were included in the insurance database ≥1 year after surgery. The main exposure variable was the presence of a pediatric feeding disorder, defined as a need for a feeding tube at discharge or diagnosis of dysphagia or feeding-related difficulty within the study timeframe. Main outcomes include overall and feeding-related medical care use, defined as readmissions and outpatient use, and feeding-related cost of care within 1 year of surgery. RESULTS: A total of 10 849 pediatric patients were identified, with 3347 (30.9%) presenting with pediatric feeding disorder within 1 year of surgery. Patients with pediatric feeding disorder spent a median of 12 days (IQR, 6-33 days) in the hospital, compared with 5 days (IQR, 3-8 days) in patients without (P < .001). Rate ratios for overall readmissions, feeding-related readmissions, feeding-related outpatient use, and cost of care over the first year after surgery were significantly increased at 2.9 (95% CI, 2.5-3.4), 5.1 (95% CI, 4.6-5.7), 7.7 (95% CI, 6.5-9.1), and 2.2 (95% CI, 2.0-2.3) among patients with pediatric feeding disorder as compared with those without. CONCLUSIONS: Pediatric feeding disorder after congenital heart surgery is associated with a significant healthcare burden. Multidisciplinary care for and research on this health condition is needed to identify optimal management strategies to reduce this burden and improve outcomes.


Subject(s)
Heart Defects, Congenital , Patient Readmission , Humans , Child , Retrospective Studies , Cohort Studies , Heart Defects, Congenital/surgery , Delivery of Health Care
12.
J Gen Intern Med ; 38(2): 277-284, 2023 02.
Article in English | MEDLINE | ID: mdl-35319086

ABSTRACT

BACKGROUND: The per diem financial structure of hospice care may lead agencies to consider patient-level factors when weighing admissions. OBJECTIVE: To investigate if treatment cost, disease complexity, and diagnosis are associated with hospice willingness to accept patients. DESIGN: In this 2019 online survey study, individuals involved in hospice admissions decisions were randomized to view one of six hypothetical patient vignettes: "high-cost, high-complexity," "low-cost, high-complexity," and "low-cost, low-complexity" within two diseases: heart failure and cystic fibrosis. Vignettes included demographics, prognoses, goals, and medications with costs. Respondents indicated their perceived likelihood of acceptance to their hospice; if likelihood was <100%, respondents were asked the barriers to acceptance. We used bivariate tests to examine associations between demographic, clinical, and organizational factors and likelihood of acceptance. PARTICIPANTS: Individuals involved in hospice admissions decisions MAIN MEASURES: Likelihood of acceptance to hospice care KEY RESULTS: N=495 (76% female, 53% age 45-64). Likelihoods of acceptance in cystic fibrosis were 79.8% (high-cost, high-complexity), 92.4% (low-cost, high-complexity), and 91.5% (low-cost, low-complexity), and in heart failure were 65.9% (high-cost, high-complexity), 87.3% (low-cost, high-complexity), and 96.6% (low-cost, low-complexity). For both heart failure and cystic fibrosis, respondents were less likely to accept the high-cost, high-complexity patient than the low-cost, high-complexity patient (65.9% vs. 87.3%, 79.8% vs. 92.4%, both p<0.001). For heart failure, respondents were less likely to accept the low-cost, high-complexity patient than the low-cost, low-complexity patient (87.3% vs. 96.6%, p=0.004). Treatment cost was the most common barrier for 5 of 6 vignettes. CONCLUSIONS: This study suggests that patients receiving expensive and/or complex treatments for palliation may have difficulty accessing hospice.


Subject(s)
Cystic Fibrosis , Heart Failure , Hospice Care , Hospices , Humans , Female , Middle Aged , Male , Health Care Costs , Heart Failure/therapy
13.
Br J Dermatol ; 188(1): 41-51, 2023 01 23.
Article in English | MEDLINE | ID: mdl-36689519

ABSTRACT

BACKGROUND: Pain is rated by patients with hidradenitis suppurativa (HS) as the disease's most impactful symptom. HS therapies are often insufficient to control inflammatory disease activity and pain. A better understanding of patient experiences with pain may improve patient-provider relationships and help identify strategies for addressing HS pain. OBJECTIVES: This qualitative study sought to characterize lived pain experiences of those with HS. METHODS: English-speaking patients ≥ 18 years old with a dermatologist-confirmed diagnosis of HS and an average numerical rating scale pain score of ≥ 1 over the preceding week were recruited from a single academic medical centre in Atlanta, Georgia, USA. Semistructured interviews were conducted from November 2019 to March 2020 to explore participants' HS pain experiences and the subsequent impact on their lives. Thematic saturation was reached after interviewing 21 participants. Interviews were audio recorded, transcribed, and analysed using thematic analysis. RESULTS: Among 21 study participants, the median 7-day average pain score was 6 (interquartile range 3-7; scale ranges from 0 to 10, with 10 being most pain). Participants' descriptions of pain were consistent with nociceptive pain, neuropathic pain and itch. Pain impacted multiple life domains, including physical limitations (decreased mobility and impaired sleep), decreased psychological wellbeing (irritability, depression, loss of control, and difficulty communicating pain experiences) and impaired social relationships (social isolation, intimacy problems and difficulty fulfilling social responsibilities). Although participants reported chronic discomfort, acutely painful and unpredictable HS disease flares caused more distress and quality-of-life (QoL) burden. Participants frequently treated their pain without input from the medical team, sometimes with unsafe medication doses or combinations. Factors contributing to self-management of pain included difficulty accessing timely outpatient care during disease flares and fear of stigma from healthcare providers. CONCLUSIONS: When present, HS-related pain may impact not only physical wellbeing but also mental health and relationships. In addition to therapies that target the inflammatory disease burden, treating the symptom of pain may improve patients' QoL and wellbeing. Because patients with HS have difficulty explaining their pain, proactively asking them about pain may identify unmet needs, facilitate better pain control and improve QoL. Further, the influence of HS-related pain on numerous aspects of QoL suggests the need for multidisciplinary, patient-centred approaches to HS pain management.


Subject(s)
Hidradenitis Suppurativa , Neuralgia , Humans , Adolescent , Hidradenitis Suppurativa/diagnosis , Quality of Life , Pain Management , Cost of Illness
14.
J Am Soc Nephrol ; 2022 Oct 19.
Article in English | MEDLINE | ID: mdl-36261299

ABSTRACT

Structural racism embodies the many ways in which society fosters racial discrimination through "mutually reinforcing inequitable systems" that limit access to resources and opportunities that can promote health and well-being among marginalized communities. To achieve health equity, and kidney health equity more specifically, structural racism must be eliminated. In February 2022, the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) convened the "Designing Interventions that Address Structural Racism to Reduce Kidney Health Disparities" workshop which was aimed at describing the mechanisms through which structural racism contributes to health and healthcare disparities for people along the continuum of kidney disease; and identifying actionable opportunities for interventional research focused on dismantling or addressing the effects of structural racism. Participants identified six domains as key targets for interventions and future research: 1) apply an anti-racism lens, 2) promote structural interventions, 3) target multiple levels, 4) promote effective community and stakeholder engagement, 5) improve data collection, and 6) advance health equity through new healthcare models. There exists an urgent need for research to develop, implement and evaluate interventions that address the unjust systems, policies, and laws that generate and perpetuate inequities in kidney health.

15.
J Am Soc Nephrol ; 33(12): 2141-2152, 2022 12.
Article in English | MEDLINE | ID: mdl-36261301

ABSTRACT

Structural racism embodies the many ways in which society fosters racial discrimination through "mutually reinforcing inequitable systems" that limit access to resources and opportunities that can promote health and well being among marginalized communities. To achieve health equity, and kidney health equity more specifically, structural racism must be eliminated. In February 2022, the National Institute of Diabetes and Digestive and Kidney Diseases convened the "Designing Interventions that Address Structural Racism to Reduce Kidney Health Disparities" workshop, which was aimed at describing the mechanisms through which structural racism contributes to health and health care disparities for people along the continuum of kidney disease and identifying actionable opportunities for interventional research focused on dismantling or addressing the effects of structural racism. Participants identified six domains as key targets for interventions and future research: (1) apply an antiracism lens, (2) promote structural interventions, (3) target multiple levels, (4) promote effective community and stakeholder engagement, (5) improve data collection, and (6) advance health equity through new health care models. There is an urgent need for research to develop, implement, and evaluate interventions that address the unjust systems, policies, and laws that generate and perpetuate inequities in kidney health.


Subject(s)
Diabetes Mellitus , Kidney Diseases , Racism , United States , Humans , Systemic Racism , Health Promotion , National Institute of Diabetes and Digestive and Kidney Diseases (U.S.) , Racism/prevention & control , Healthcare Disparities , Kidney , Diabetes Mellitus/prevention & control
16.
Clin Infect Dis ; 74(3): 387-394, 2022 02 11.
Article in English | MEDLINE | ID: mdl-33822023

ABSTRACT

BACKGROUND: Since the introduction of remdesivir and dexamethasone for severe COVID-19 treatment, few large multi-hospital-system US studies have described clinical characteristics and outcomes of minority COVID-19 patients who present to the emergency department (ED). METHODS: This cohort study from the Cerner Real World Database (87 US health systems) from 1 December 2019 to 30 September 2020 included PCR-confirmed COVID-19 patients who self-identified as non-Hispanic Black (Black), Hispanic White (Hispanic), or non-Hispanic White (White). The main outcome was hospitalization among ED patients. Secondary outcomes included mechanical ventilation, intensive care unit care, and in-hospital mortality. Descriptive statistics and Poisson regression compared sociodemographics, comorbidities, receipt of remdesivir or dexamethasone, and outcomes by racial/ethnic groups and geographic region. RESULTS: 94 683 COVID-19 patients presented to the ED. Blacks comprised 26.7% and Hispanics 33.6%. Nearly half (45.1%) of ED patients presented to hospitals in the South. 31.4% (n = 29 687) were hospitalized. Lower proportions of Blacks were prescribed dexamethasone (29.4%; n = 7426) compared with Hispanics (40.9%; n = 13 021) and Whites (37.5%; n = 14 088). Hospitalization risks, compared with Whites, were similar in Blacks (RR: .94; 95% CI: .82-1.08; P = .4) and Hispanics (.99; .81-1.21; P = .91), but risk of in-hospital mortality was higher in Blacks (1.18; 1.06-1.31; P = .002) and Hispanics (1.28; 1.13-1.44; P < .001). CONCLUSIONS: Minority patients were overrepresented among COVID-19 ED patients, and while their risks of hospitalization were similar to Whites, in-hospital mortality risk was higher. Interventions targeting upstream social determinants of health are needed to reduce racial/ethnic disparities in COVID-19.


Subject(s)
COVID-19 Drug Treatment , Cohort Studies , Emergency Service, Hospital , Humans , SARS-CoV-2
17.
Am J Transplant ; 22(7): 1813-1822, 2022 07.
Article in English | MEDLINE | ID: mdl-35338697

ABSTRACT

The ability of kidney transplant candidates to travel outside of their usual place of care varies by sociodemographic factors, potentially exacerbating disparities in access. We used Transplant Referral Regions (TRRs) to overcome previous methodological barriers of using geographic distance to assess the characteristics and outcomes of patients listed for kidney transplant at centers in neighboring TRR or beyond neighboring TRRs. Among listed kidney transplant candidates, 20.9% traveled to a neighbor and 5.6% beyond a neighbor. A higher proportion of travelers were White, had some college education, and lived in ZIP codes with lower poverty. Travel to a neighbor was associated with a 7% increase in likelihood of deceased donor transplant (cHR: 1.07, 95% CI: 1.05, 1.09) and traveling beyond a neighbor with a 19% increase (cHR: 1.19, 95% CI: 1.15, 1.24). Travelers had similar rates of living donor transplant and waitlist mortality as patients who did not travel; those who traveled beyond a neighbor had slightly lower posttransplant mortality (HR: 0.91, 95% CI: 0.83, 0.99). In conclusion, the ability to travel outside of the recipient's assigned TRR increases access to transplantation and improves long-term survival.


Subject(s)
Kidney Transplantation , Transplants , Humans , Kidney Transplantation/adverse effects , Living Donors , Travel , Waiting Lists
18.
Ann Surg ; 275(3): 496-499, 2022 03 01.
Article in English | MEDLINE | ID: mdl-34913903

ABSTRACT

Disparities are well-documented across the continuum of surgical care. Counteracting such disparities requires new multidisciplinary approaches that utilize the expertise of affected individuals, such as community-based participatory research (CBPR). CBPR is an approach to research that is anchored in equitable, sustainable community-academic partnerships, and has been shown to improve intervention implementation and outcomes. In this article, community stakeholders and researchers outline the principles and benefits of CBPR, examples of CBPR in trauma and transplant, and future directions for CBPR within surgery.


Subject(s)
Community-Based Participatory Research , Healthcare Disparities , Surgical Procedures, Operative , Humans , United States
19.
Am J Gastroenterol ; 117(7): 1162-1165, 2022 07 01.
Article in English | MEDLINE | ID: mdl-35213405

ABSTRACT

INTRODUCTION: We examined trends in rural-urban cirrhosis mortality disparities in the United States from decedents aged 25 years and older from 1999 to 2019. METHODS: We calculated cirrhosis age-adjusted mortality rates across 3 population categories: large metropolitan (≥1 million), medium/small metropolitan (50,000-999,999), and rural (<50,000) areas using the US Centers for Disease Control and Prevention Wide-ranging ONline Data for Epidemiologic Research database. RESULTS: We found an almost 20-fold increase in the absolute difference in cirrhosis age-adjusted mortality rates between rural and large metropolitan areas between 1999 and 2019. DISCUSSION: Future research is needed to investigate reasons for this widening rural-urban disparity to improve rural cirrhosis care.


Subject(s)
Liver Cirrhosis , Rural Population , Humans , Liver Cirrhosis/epidemiology , United States/epidemiology , Urban Population
20.
Am J Kidney Dis ; 80(1): 9-19, 2022 07.
Article in English | MEDLINE | ID: mdl-35217093

ABSTRACT

RATIONALE & OBJECTIVE: Non-Hispanic Black and Hispanic patients present with kidney failure at younger ages than White patients. Younger patients are also more likely to receive transplants and home dialysis than in-center hemodialysis (ICHD), but it is unknown whether racial and ethnic disparities in treatment differ by age. We compared use of kidney replacement therapies between racial and ethnic groups among patients with incident kidney failure overall and by age. STUDY DESIGN: Retrospective cohort study. SETTING & PARTICIPANTS: 830,402 US adult (age >21 years) patients initiating kidney failure treatment during the period of 2011-2018. EXPOSURES: Patient race and ethnicity (non-Hispanic Black, non-Hispanic White, Hispanic, or other) and age group (22-44, 45-64, 65-74, or 75-99 years). OUTCOME: Treatment modality (transplant, peritoneal dialysis [PD], home hemodialysis [HHD], or ICHD) as of day 90 of treatment. ANALYTICAL APPROACH: Differences in treatment modalities were quantified for patient subgroups defined by race and ethnicity and by age. Log-binomial regression models were fit to estimate adjusted risk ratios. RESULTS: 81% of patients were treated with ICHD, 3.0% underwent transplants (85% preemptive, 57% living-donor), 10.5% were treated with PD, and 0.7% were treated with HHD. Absolute disparities in treatment were most pronounced among patients aged 22-44 years. Compared with non-Hispanic White patients, whose percentages of treatment with transplant, PD, and HHD were 10.9%, 19.0%, and 1.2%, respectively, non-Hispanic Black patients were less commonly treated with each modality (unadjusted percentages, 1.8%, 13.8%, and 0.6%, respectively), as were Hispanic patients (4.4%, 16.9%, and 0.5%, respectively; all differences P < 0.001). After adjustment, the largest relative disparities were observed for transplant among the 22-44-year age group; compared with non-Hispanic White patients, the adjusted risk ratios for non-Hispanic Black and Hispanic patients were 0.21 (95% CI, 0.19-0.23) and 0.47 (95% CI, 0.43, 0.51), respectively. LIMITATIONS: Race and ethnicity data not self-reported. CONCLUSIONS: Among adults with incident kidney failure, racial and ethnic disparities in transplant and home dialysis use are most pronounced among the youngest adult patient age group.


Subject(s)
Ethnicity , Renal Insufficiency , Adult , Healthcare Disparities , Hemodialysis, Home , Hispanic or Latino , Humans , Retrospective Studies , Young Adult
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