1
|
Myaskovsky L, Leyva Y, Puttarajappa C, Kalaria A, Ng YH, Vélez-Bermúdez M, Zhu Y, Bryce C, Croswell E, Wesselman H, Kendall K, Chang CC, Boulware LE, Tevar A, Dew MA. Kidney Transplant Fast Track and Likelihood of Waitlisting and Transplant: A Nonrandomized Clinical Trial. JAMA Intern Med 2025:2831195. [PMID: 40063052 PMCID: PMC11894542 DOI: 10.1001/jamainternmed.2025.0043] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Grants] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 07/29/2024] [Accepted: 12/20/2024] [Indexed: 03/14/2025]
Abstract
Importance Kidney transplant (KT) is the optimal treatment for end-stage kidney disease (ESKD). The evaluation process for KT is lengthy, time-consuming, and burdensome, and racial and ethnic disparities persist. Objective To investigate the potential association of the Kidney Transplant Fast Track (KTFT) evaluation approach with the likelihood of waitlisting, KT, and associated disparities compared with standard care. Design, Setting, and Participants This nonrandomized clinical trial was a prospective comparative cohort trial with a historical control (HC) comparison and equal follow-up duration at a single urban transplant center. Study duration was 2015 to 2018 for KTFT, with follow-up through 2022, and 2010 to 2014 for HC, with follow-up through 2018. Adult, English-speaking patients with ESKD, no history of KT, and a scheduled KT evaluation appointment were included. Among 1472 eligible patients for the KTFT group, 1288 consented and completed the baseline interview and 170 were excluded for not attending an evaluation appointment; among 1337 patients eligible for the HC group, 1152 consented and completed the baseline interview and none were excluded. Data were analyzed from August 2023 through December 2024. Exposure Streamlined, patient-centered, coordinated-care KT evaluation process. Main Outcomes and Measures Time to waitlisting for KT and receipt of KT. Results The study included 1118 participants receiving KTFT (416 female [37.2%]; mean [SD] age, 57.2 [13.2] years; 245 non-Hispanic Black [21.9%], 790 non-Hispanic White [70.7%], and 83 other race or ethnicity [7.4%]) and 1152 participants in the HC group (447 female [38.8%]; mean [SD] age, 55.5 [13.2] years; 267 non-Hispanic Black [23.2%], 789 non-Hispanic White [68.5%], and 96 other race or ethnicity [8.3%]). After adjusting for demographic and clinical factors, the KTFT compared with the HC group had a higher likelihood of being placed on the active waitlist for KT (subdistribution hazard ratio [SHR], 1.40; 95% CI, 1.24-1.59). Among individuals who were waitlisted, patients in the KTFT vs HC group had a higher likelihood of receiving a KT (SHR, 1.21; 95% CI, 1.04-1.41). Black patients (SHR, 1.54; 95% CI, 1.11-2.14) and White patients (SHR, 1.38; 95% CI, 1.16-1.65) receiving KTFT were more likely to be waitlisted for KT than those in the HC group, but no such difference was found for patients with other race or ethnicity. Among Black patients, those with KTFT were more likely than those in the HC group to undergo KT (SHR, 1.52; 95% CI, 1.06-2.16), but no significant differences were found for White patients or those with other race or ethnicity. Conclusions and Relevance This study found that KTFT was associated with a higher likelihood of waitlisting and KT than standard care. Findings suggest that KTFT may be associated with reduced disparities in KT by race and ethnicity. Trial Registration ClinicalTrials.gov Identifier: NCT02342119.
Collapse
Affiliation(s)
- Larissa Myaskovsky
- Center for Healthcare Equity in Kidney Disease, University of New Mexico Health Sciences Center, Albuquerque
- Department of Internal Medicine, University of New Mexico School of Medicine, Albuquerque
| | - Yuridia Leyva
- Center for Healthcare Equity in Kidney Disease, University of New Mexico Health Sciences Center, Albuquerque
| | - Chethan Puttarajappa
- Department of Medicine, University of Pittsburgh School of Medicine, Pittsburgh, Pennsylvania
| | - Arjun Kalaria
- Department of Medicine, University of Pittsburgh School of Medicine, Pittsburgh, Pennsylvania
- Now with Florida Kidney Physicians, Tampa
| | - Yue-Harn Ng
- Department of Medicine, University of Washington School of Medicine, Seattle
| | - Miriam Vélez-Bermúdez
- Center for Healthcare Equity in Kidney Disease, University of New Mexico Health Sciences Center, Albuquerque
| | - Yiliang Zhu
- Department of Internal Medicine, University of New Mexico School of Medicine, Albuquerque
| | - Cindy Bryce
- Department of Health Policy and Management, University of Pittsburgh School of Public Health, Pittsburgh, Pennsylvania
| | - Emilee Croswell
- Department of Psychiatry, University of Pittsburgh School of Medicine, Pittsburgh, Pennsylvania
| | | | | | - Chung-Chou Chang
- Department of Medicine, University of Pittsburgh School of Medicine, Pittsburgh, Pennsylvania
- Department of Epidemiology, University of Pittsburgh School of Public Health, Pittsburgh, Pennsylvania
- Department of Biostatistics, University of Pittsburgh School of Public Health, Pittsburgh, Pennsylvania
| | | | - Amit Tevar
- Department of Surgery, University of Pittsburgh School of Medicine, Pittsburgh, Pennsylvania
| | - Mary Amanda Dew
- Department of Psychiatry, University of Pittsburgh School of Medicine, Pittsburgh, Pennsylvania
- Department of Epidemiology, University of Pittsburgh School of Public Health, Pittsburgh, Pennsylvania
- Department of Biostatistics, University of Pittsburgh School of Public Health, Pittsburgh, Pennsylvania
- Department of Psychology, University of Pittsburgh, Pittsburgh, Pennsylvania
- Department of Acute and Tertiary Care, School of Nursing, University of Pittsburgh, Pittsburgh, Pennsylvania
| |
Collapse
|
2
|
Boulware LE, Mohottige D, Purnell TS. Focusing on Systems and Policies to Solve the Kidney Transplant Equity Crisis. JAMA Intern Med 2025; 185:195-196. [PMID: 39680386 DOI: 10.1001/jamainternmed.2024.6654] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 12/17/2024]
Affiliation(s)
- L Ebony Boulware
- Wake Forest University School of Medicine, Winston-Salem, North Carolina
| | - Dinushika Mohottige
- Institute for Health Equity Research, Department of Population Health, Icahn School of Medicine at Mount Sinai, New York, New York
- Barbara T. Murphy Division of Nephrology, Department of Medicine, Icahn School of Medicine at Mount Sinai, New York, New York
| | - Tanjala S Purnell
- Department of Epidemiology, Johns Hopkins Bloomberg School of Public Health, Baltimore, Maryland
- Department of Health Policy and Management, Johns Hopkins Bloomberg School of Public Health, Baltimore, Maryland
- Department of Health, Behavior and Society, Johns Hopkins Bloomberg School of Public Health, Baltimore, Maryland
- Department of Surgery, Johns Hopkins School of Medicine, Baltimore, Maryland
| |
Collapse
|
3
|
Lentine KL, Waterman AD, Cooper M, Nagral S, Gardiner D, Spiro M, Rela M, Danovitch G, Watson CJE, Thomson D, Van Assche K, Torres M, Domínguez-Gil B, Delmonico FL. Expanding Opportunities for Living Donation: Recommendations From the 2023 Santander Summit to Ensure Donor Protections, Informed Decision Making, and Equitable Access. Transplantation 2025; 109:22-35. [PMID: 39437374 DOI: 10.1097/tp.0000000000005124] [Citation(s) in RCA: 1] [Impact Index Per Article: 1.0] [Reference Citation Analysis] [Abstract] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 10/25/2024]
Abstract
A strategic vision toward global convergence in transplantation must encourage and remove barriers to living organ donation and transplantation. Here, we discuss deliberations of a working group of the 2023 Santander Summit charged with formulating recommendations for the safe expansion of living donor kidney transplantation and living donor liver transplantation worldwide. Living donor kidney transplantation has grown to be the preferred treatment for advanced kidney failure. Living donor liver transplantation emerged more recently as a strategy to reduce waitlist mortality, with adoption influenced by cultural factors, regional policies, clinical team experience, and the maturity of regional deceased donor transplant systems. Barriers to living donor transplantation span domains of education, infrastructure, risk assessment/risk communication, and financial burden to donors. Paired donor exchange is a growing option for overcoming incompatibilities to transplantation but is variably used across and within countries. Effectively expanding access to living donor transplantation requires multifaceted strategies, including improved education and outreach, and measures to enhance efficiency, transparency, and shared decision making in donor candidate evaluation. Efforts toward global dissemination and vigilant oversight of best practices and international standards for the assessment, informed consent, approval, and monitoring of living donors are needed. Fostering greater participation in paired exchange requires eliminating disincentives and logistical obstacles for transplant programs and patients, and establishing an ethical and legal framework grounded in World Health Organization Guiding Principles. Sharing of best practices from successful countries and programs to jurisdictions with emerging practices is vital to safely expand the practice of living donation worldwide and bring the field together globally.
Collapse
Affiliation(s)
- Krista L Lentine
- Saint Louis University Transplant Center, SSM Health Saint Louis University Hospital, St. Louis, MO
| | - Amy D Waterman
- Academic Institute, Houston Methodist Hospital, Houston, TX
| | - Matthew Cooper
- Transplant Surgery, Medical College of Wisconsin, Milwaukee, WI
| | - Sanjay Nagral
- Jaslok Hospital and Research Centre, Mumbai, Maharashtra, India
| | - Dale Gardiner
- Organ and Tissue Donation and Transplantation, NHS Blood and Transplant, Bristol, United Kingdom
| | - Michael Spiro
- Transplant Surgery, University College London, London, United Kingdom
| | - Mohamed Rela
- Rela Institute and Medical Centre, Bharath Institute of Higher Education and Research, Chennai, Tamil Nadu, India
| | | | | | - David Thomson
- Groote Schuur Hospital, University of Cape Town, Cape Town, South Africa
| | - Kristof Van Assche
- Research Group Personal Rights and Property Rights, Faculty of Law, University of Antwerp, Antwerp, Belgium
| | - Martín Torres
- Instituto Nacional Central Unico de Ablación e Implante (INCUCAI), Ministry of Health, Buenos Aires, Argentina
| | | | | |
Collapse
|
4
|
Li Y, Menon G, Kim B, Clark-Cutaia MN, Long JJ, Metoyer GT, Mohottige D, Strauss AT, Ghildayal N, Quint EE, Wu W, Segev DL, McAdams-DeMarco MA. Components of Residential Neighborhood Deprivation and Their Impact on the Likelihood of Live-Donor and Preemptive Kidney Transplantation. Clin Transplant 2024; 38:e15382. [PMID: 38973768 PMCID: PMC11232925 DOI: 10.1111/ctr.15382] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 04/19/2024] [Revised: 05/30/2024] [Accepted: 06/05/2024] [Indexed: 07/09/2024]
Abstract
INTRODUCTION Adults residing in deprived neighborhoods face various socioeconomic stressors, hindering their likelihood of receiving live-donor kidney transplantation (LDKT) and preemptive kidney transplantation (KT). We quantified the association between residential neighborhood deprivation index (NDI) and the likelihood of LDKT/preemptive KT, testing for a differential impact by race and ethnicity. METHODS We studied 403 937 adults (age ≥ 18) KT candidates (national transplant registry; 2006-2021). NDI and its 10 components were averaged at the ZIP-code level. Cause-specific hazards models were used to quantify the adjusted hazard ratio (aHR) of LDKT and preemptive KT across tertiles of NDI and its 10 components. RESULTS Candidates residing in high-deprivation neighborhoods were more likely to be female (40.1% vs. 36.2%) and Black (41.9% vs. 17.7%), and were less likely to receive both LDKT (aHR = 0.66, 95% confidence interval [CI]: 0.64-0.67) and preemptive KT (aHR = 0.60, 95% CI: 0.59-0.62) than those in low-deprivation neighborhoods. These associations differedby race and ethnicity (Black: aHRLDKT = 0.58, 95% CI: 0.55-0.62; aHRpreemptive KT = 0.68, 95% CI: 0.63-0.73; Pinteractions: LDKT < 0.001; Preemptive KT = 0.002). All deprivation components were associated with the likelihood of both LDKT and preemptive KT (except median home value): for example, higher median household income (LDKT: aHR = 1.08, 95% CI: 1.07-1.09; Preemptive KT: aHR = 1.10, 95% CI: 1.08-1.11) and educational attainments (≥high school [LDKT: aHR = 1.17, 95% CI: 1.15-1.18; Preemptive KT: aHR = 1.23, 95% CI: 1.21-1.25]). CONCLUSION Residence in socioeconomically deprived neighborhoods is associated with a lower likelihood of LDKT and preemptive KT, differentially impacting minority candidates. Identifying and understanding which neighborhood-level socioeconomic status contributes to these racial disparities can be instrumental in tailoring interventions to achieve health equity in LDKT and preemptive KT.
Collapse
Affiliation(s)
- Yiting Li
- Department of Surgery, New York University Grossman School of Medicine, New York, New York, USA
| | - Gayathri Menon
- Department of Surgery, New York University Grossman School of Medicine, New York, New York, USA
| | - Byoungjun Kim
- Department of Surgery, New York University Grossman School of Medicine, New York, New York, USA
- Department of Population Health, New York University Grossman School of Medicine, New York, New York, USA
| | - Maya N Clark-Cutaia
- Rory Meyers College of Nursing, New York University, New York, New York, USA
- Department of Medicine, New York University Grossman School of Medicine, New York, New York, USA
| | - Jane J Long
- Department of Surgery, New York University Grossman School of Medicine, New York, New York, USA
| | - Garyn T Metoyer
- Department of Surgery, New York University Grossman School of Medicine, New York, New York, USA
| | - Dinushika Mohottige
- Department of Medicine, Icahn School of Medicine at Mount Sinai, New York, New York, USA
| | - Alexandra T Strauss
- Department of Medicine, Johns Hopkins University School of Medicine, Baltimore, Maryland, USA
| | - Nidhi Ghildayal
- Department of Surgery, New York University Grossman School of Medicine, New York, New York, USA
| | - Evelien E Quint
- Division of Transplant Surgery, Department of Surgery, University Medical Center Groningen, Groningen, The Netherlands
| | - Wenbo Wu
- Department of Population Health, New York University Grossman School of Medicine, New York, New York, USA
- Department of Medicine, New York University Grossman School of Medicine, New York, New York, USA
| | - Dorry L Segev
- Department of Surgery, New York University Grossman School of Medicine, New York, New York, USA
- Department of Population Health, New York University Grossman School of Medicine, New York, New York, USA
| | - Mara A McAdams-DeMarco
- Department of Surgery, New York University Grossman School of Medicine, New York, New York, USA
- Department of Population Health, New York University Grossman School of Medicine, New York, New York, USA
| |
Collapse
|
5
|
Gadelkareem RA, Abdelgawad AM, Mohammed N, Zarzour MA, Khalil M, Reda A, Hammouda HM. Challenges to establishing and maintaining kidney transplantation programs in developing countries: What are the coping strategies? World J Methodol 2024; 14:91626. [PMID: 38983660 PMCID: PMC11229866 DOI: 10.5662/wjm.v14.i2.91626] [Citation(s) in RCA: 1] [Impact Index Per Article: 1.0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 01/02/2024] [Revised: 01/31/2024] [Accepted: 03/12/2024] [Indexed: 06/13/2024] Open
Abstract
Kidney transplantation (KT) is the optimal form of renal replacement therapy for patients with end-stage renal diseases. However, this health service is not available to all patients, especially in developing countries. The deceased donor KT programs are mostly absent, and the living donor KT centers are scarce. Single-center studies presenting experiences from developing countries usually report a variety of challenges. This review addresses these challenges and the opposing strategies by reviewing the single-center experiences of developing countries. The financial challenges hamper the infrastructural and material availability, coverage of transplant costs, and qualification of medical personnel. The sociocultural challenges influence organ donation, equity of beneficence, and regular follow-up work. Low interests and motives for transplantation may result from high medicolegal responsibilities in KT practice, intense potential psychosocial burdens, complex qualification protocols, and low productivity or compensation for KT practice. Low medical literacy about KT advantages is prevalent among clinicians, patients, and the public. The inefficient organizational and regulatory oversight is translated into inefficient healthcare systems, absent national KT programs and registries, uncoordinated job descriptions and qualification protocols, uncoordinated on-site investigations with regulatory constraints, and the prevalence of commercial KT practices. These challenges resulted in noticeable differences between KT services in developed and developing countries. The coping strategies can be summarized in two main mechanisms: The first mechanism is maximizing the available resources by increasing the rates of living kidney donation, promoting the expertise of medical personnel, reducing material consumption, and supporting the establishment and maintenance of KT programs. The latter warrants the expansion of the public sector and the elimination of non-ethical KT practices. The second mechanism is recruiting external resources, including financial, experience, and training agreements.
Collapse
Affiliation(s)
- Rabea Ahmed Gadelkareem
- Department of Urology, Assiut Urology and Nephrology Hospital, Faculty of Medicine, Assiut University, Assiut 71515, Egypt
| | - Amr Mostafa Abdelgawad
- Department of Urology, Assiut Urology and Nephrology Hospital, Faculty of Medicine, Assiut University, Assiut 71515, Egypt
| | - Nasreldin Mohammed
- Department of Urology, Assiut Urology and Nephrology Hospital, Faculty of Medicine, Assiut University, Assiut 71515, Egypt
| | - Mohammed Ali Zarzour
- Department of Urology, Assiut Urology and Nephrology Hospital, Faculty of Medicine, Assiut University, Assiut 71515, Egypt
| | - Mahmoud Khalil
- Department of Urology, Assiut Urology and Nephrology Hospital, Faculty of Medicine, Assiut University, Assiut 71515, Egypt
| | - Ahmed Reda
- Department of Urology, Assiut Urology and Nephrology Hospital, Faculty of Medicine, Assiut University, Assiut 71515, Egypt
| | - Hisham Mokhtar Hammouda
- Department of Urology, Assiut Urology and Nephrology Hospital, Faculty of Medicine, Assiut University, Assiut 71515, Egypt
| |
Collapse
|
6
|
Hippen BE, Hart GM, Maddux FW. A Transplant-Inclusive Value-Based Kidney Care Payment Model. Kidney Int Rep 2024; 9:1590-1600. [PMID: 38899170 PMCID: PMC11184397 DOI: 10.1016/j.ekir.2024.02.004] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 09/26/2023] [Revised: 01/06/2024] [Accepted: 02/05/2024] [Indexed: 06/21/2024] Open
Abstract
In the United States, kidney care payment models are migrating toward value-based care (VBC) models incentivizing quality of care at lower cost. Current kidney VBC models will continue through 2026. We propose a future transplant-inclusive VBC (TIVBC) model designed to supplement current models focusing on patients with advanced chronic kidney disease (CKD) and end-stage kidney disease (ESKD). The proposed TIVBC is structured as an episode-of-care model with risk-based reimbursement for "referral/evaluation/waitlisting" (REW, referencing kidney transplantation), "primary hospitalization to 180 days posttransplant," and "long-term graft survival." Challenges around organ acquisition costs, adjustments to quality metrics, and potential criticisms of the proposed model are discussed. We propose next steps in risk-adjustment and cost-prediction to develop as an end-to-end, TIVBC model.
Collapse
Affiliation(s)
- Benjamin E. Hippen
- Global Medical Office, Fresenius Medical Care, Waltham, Massachusetts, USA
| | | | - Franklin W. Maddux
- Global Medical Office, Fresenius Medical Care, Waltham, Massachusetts, USA
| |
Collapse
|
7
|
Li Y, Menon G, Kim B, Bae S, Quint EE, Clark-Cutaia MN, Wu W, Thompson VL, Crews DC, Purnell TS, Thorpe RJ, Szanton SL, Segev DL, McAdams DeMarco MA. Neighborhood Segregation and Access to Live Donor Kidney Transplantation. JAMA Intern Med 2024; 184:402-413. [PMID: 38372985 PMCID: PMC10877505 DOI: 10.1001/jamainternmed.2023.8184] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 09/26/2023] [Accepted: 12/10/2023] [Indexed: 02/20/2024]
Abstract
Importance Identifying the mechanisms of structural racism, such as racial and ethnic segregation, is a crucial first step in addressing the persistent disparities in access to live donor kidney transplantation (LDKT). Objective To assess whether segregation at the candidate's residential neighborhood and transplant center neighborhood is associated with access to LDKT. Design, Setting, and Participants In this cohort study spanning January 1995 to December 2021, participants included non-Hispanic Black or White adult candidates for first-time LDKT reported in the US national transplant registry. The median (IQR) follow-up time for each participant was 1.9 (0.6-3.0) years. Main Outcome and Measures Segregation, measured using the Theil H method to calculate segregation tertiles in zip code tabulation areas based on the American Community Survey 5-year estimates, reflects the heterogeneity in neighborhood racial and ethnic composition. To quantify the likelihood of LDKT by neighborhood segregation, cause-specific hazard models were adjusted for individual-level and neighborhood-level factors and included an interaction between segregation tertiles and race. Results Among 162 587 candidates for kidney transplant, the mean (SD) age was 51.6 (13.2) years, 65 141 (40.1%) were female, 80 023 (49.2%) were Black, and 82 564 (50.8%) were White. Among Black candidates, living in a high-segregation neighborhood was associated with 10% (adjusted hazard ratio [AHR], 0.90 [95% CI, 0.84-0.97]) lower access to LDKT relative to residence in low-segregation neighborhoods; no such association was observed among White candidates (P for interaction = .01). Both Black candidates (AHR, 0.94 [95% CI, 0.89-1.00]) and White candidates (AHR, 0.92 [95% CI, 0.88-0.97]) listed at transplant centers in high-segregation neighborhoods had lower access to LDKT relative to their counterparts listed at centers in low-segregation neighborhoods (P for interaction = .64). Within high-segregation transplant center neighborhoods, candidates listed at predominantly minority neighborhoods had 17% lower access to LDKT relative to candidates listed at predominantly White neighborhoods (AHR, 0.83 [95% CI, 0.75-0.92]). Black candidates residing in or listed at transplant centers in predominantly minority neighborhoods had significantly lower likelihood of LDKT relative to White candidates residing in or listed at transplant centers located in predominantly White neighborhoods (65% and 64%, respectively). Conclusions Segregated residential and transplant center neighborhoods likely serve as a mechanism of structural racism, contributing to persistent racial disparities in access to LDKT. To promote equitable access, studies should assess targeted interventions (eg, community outreach clinics) to improve support for potential candidates and donors and ultimately mitigate the effects of segregation.
Collapse
Affiliation(s)
- Yiting Li
- Department of Surgery, New York University Grossman School of Medicine, New York, New York
| | - Gayathri Menon
- Department of Surgery, New York University Grossman School of Medicine, New York, New York
| | - Byoungjun Kim
- Department of Surgery, New York University Grossman School of Medicine, New York, New York
| | - Sunjae Bae
- Department of Surgery, New York University Grossman School of Medicine, New York, New York
| | - Evelien E Quint
- Division of Transplant Surgery, Department of Surgery, University Medical Center Groningen, Groningen, the Netherlands
| | - Maya N Clark-Cutaia
- New York University Rory Meyers College of Nursing, New York, New York
- Department of Medicine, New York University Grossman School of Medicine, New York, New York
| | - Wenbo Wu
- Department of Population Health, New York University Grossman School of Medicine, New York, New York
- Department of Medicine, New York University Grossman School of Medicine, New York, New York
| | - Valerie L Thompson
- Department of Surgery, New York University Grossman School of Medicine, New York, New York
- Division of Transplantation, Department of Surgery, Johns Hopkins School of Medicine, Baltimore, Maryland
| | - Deidra C Crews
- Division of Nephrology, Johns Hopkins University School of Medicine, Baltimore, Maryland
| | - Tanjala S Purnell
- Division of Transplantation, Department of Surgery, Johns Hopkins School of Medicine, Baltimore, Maryland
- Department of Epidemiology, Johns Hopkins Bloomberg School of Public Health, Baltimore, Maryland
- Department of Health Behavior and Society, Johns Hopkins Bloomberg School of Public Health, Baltimore, Maryland
- Johns Hopkins Center for Health Equity, Johns Hopkins University, Baltimore, Maryland
| | - Roland J Thorpe
- Johns Hopkins Center for Health Equity, Johns Hopkins University, Baltimore, Maryland
| | - Sarah L Szanton
- Johns Hopkins University School of Nursing, Baltimore, Maryland
| | - Dorry L Segev
- Department of Surgery, New York University Grossman School of Medicine, New York, New York
- Department of Population Health, New York University Grossman School of Medicine, New York, New York
| | - Mara A McAdams DeMarco
- Department of Surgery, New York University Grossman School of Medicine, New York, New York
- Department of Population Health, New York University Grossman School of Medicine, New York, New York
| |
Collapse
|
8
|
Lui E, Gill J, Hamid M, Wen C, Singh N, Okoh P, Xu X, Boakye P, James CE, Waterman AD, Edwards B, Mucsi I. Racialized and Immigrant Status and the Pursuit of Living Donor Kidney Transplant - a Canadian Cohort Study. Kidney Int Rep 2024; 9:960-972. [PMID: 38765593 PMCID: PMC11101831 DOI: 10.1016/j.ekir.2024.01.044] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 03/08/2023] [Revised: 01/12/2024] [Accepted: 01/22/2024] [Indexed: 05/22/2024] Open
Abstract
Introduction Both immigrant and racialized status may be associated with the pursuit of living donor kidney transplant (LDKT). Methods This study was a secondary analysis of a convenience cross-sectional sample of patients with kidney failure in Toronto, obtained from our "Comprehensive Psychosocial Research Data System" research database. The exposures included racialized, immigrant, and combined immigrant and racialized status (White nonimmigrant, racialized nonimmigrant, White immigrant and racialized immigrant). Outcomes include the following: (i) having spoken about LDKT with others, (ii) having a potential living donor (LD) identified, (iii) having allowed others to share the need for LDKT, (iv) having directly asked a potential donor to be tested, and (v) accept a hypothetical LDKT offer. We assessed the association between exposure and outcomes using univariable, and multivariable binary or multinominal logistic regression (reference: White or White nonimmigrant participants). Results Of the 498 participants, 281 (56%) were immigrants; 142 (28%) were African, Caribbean, and Black (ACB); 123 (25%) were Asian; and 233 (47%) were White. Compared to White nonimmigrants, racialized immigrants (relative risk ratio [RRR]: 2.98; 95% confidence interval [CI]: 1.76-5.03) and racialized nonimmigrants (RRR: 2.84; 95% CI: 1.22-6.65) were more likely not to have spoken about LDKT with others (vs. having spoken or planning to do so). Both racialized immigrant (odds ratio [OR]: 4.07; 95% CI: 2.50-6.34), racialized nonimmigrants (OR: 2.68; 95% CI: 1.31-5.51) and White immigrants (OR: 2.68; 95% CI: 1.43-5.05) were more likely not to have a potential LD identified. Conclusion Both racialized and immigrant status are associated with less readiness to pursue LDKT. Supporting patients to communicate their need for LDKT may improve equitable access to LDKT.
Collapse
Affiliation(s)
- Eric Lui
- Ajmera Transplant Center and Division of Nephrology Department, University Health Network, University of Toronto, Toronto, Ontario, Canada
| | - Jasleen Gill
- Ajmera Transplant Center and Division of Nephrology Department, University Health Network, University of Toronto, Toronto, Ontario, Canada
| | - Marzan Hamid
- Ajmera Transplant Center and Division of Nephrology Department, University Health Network, University of Toronto, Toronto, Ontario, Canada
- Stanford University School of Medicine, Stanford, California, USA
| | - Cindy Wen
- Ajmera Transplant Center and Division of Nephrology Department, University Health Network, University of Toronto, Toronto, Ontario, Canada
| | - Navneet Singh
- Ajmera Transplant Center and Division of Nephrology Department, University Health Network, University of Toronto, Toronto, Ontario, Canada
| | - Princess Okoh
- Ajmera Transplant Center and Division of Nephrology Department, University Health Network, University of Toronto, Toronto, Ontario, Canada
| | - Xihui Xu
- Ajmera Transplant Center and Division of Nephrology Department, University Health Network, University of Toronto, Toronto, Ontario, Canada
| | - Priscilla Boakye
- Daphne Cockwell School of Nursing, Toronto Metropolitan University, Toronto, Ontario, Canada
| | - Carl E. James
- Faculty of Education, York University, Toronto, Ontario, Canada
| | - Amy D. Waterman
- Department of Surgery and J.C. Walter Jr. Transplant Center, Houston Methodist Hospital, Houston, Texas, USA
| | - Beth Edwards
- Ajmera Transplant Center and Division of Nephrology Department, University Health Network, University of Toronto, Toronto, Ontario, Canada
| | - Istvan Mucsi
- Ajmera Transplant Center and Division of Nephrology Department, University Health Network, University of Toronto, Toronto, Ontario, Canada
| |
Collapse
|
9
|
Rizzolo K, Shen JI. Barriers to home dialysis and kidney transplantation for socially disadvantaged individuals. Curr Opin Nephrol Hypertens 2024; 33:26-33. [PMID: 38014998 DOI: 10.1097/mnh.0000000000000939] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/29/2023]
Abstract
PURPOSE OF REVIEW People with kidney disease facing social disadvantage have multiple barriers to quality kidney care. The aim of this review is to summarize the patient, clinician, and system wide factors that impact access to quality kidney care and discuss potential solutions to improve outcomes for socially disadvantaged people with kidney disease. RECENT FINDINGS Patient level factors such as poverty, insurance, and employment affect access to care, and low health literacy and kidney disease awareness can affect engagement with care. Clinician level factors include lack of early nephrology referral, limited education of clinicians in home dialysis and transplantation, and poor patient-physician communication. System-level factors such as lack of predialysis care and adequate health insurance can affect timely access to care. Neighborhood level socioeconomic factors, and lack of inclusion of these factors into public policy payment models, can affect ability to access care. Moreover, the effects of structural racism and discrimination nay negatively affect the kidney care experience for racially and ethnically minoritized individuals. SUMMARY Patient, clinician, and system level factors affect access to and engagement in quality kidney care. Multilevel solutions are critical to achieving equitable care for all affected by kidney disease.
Collapse
Affiliation(s)
- Katherine Rizzolo
- Boston University Chobanian & Avedisian School of Medicine and Boston Medical Center, Section of Nephrology
| | - Jenny I Shen
- The Lundquist Institute at Harbor-UCLA Medical Center, Torrance, California, USA
| |
Collapse
|
10
|
Reed RD, Locke JE. Mitigating Health Disparities in Transplantation Requires Equity, Not Equality. Transplantation 2024; 108:100-114. [PMID: 38098158 PMCID: PMC10796154 DOI: 10.1097/tp.0000000000004630] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 12/18/2023]
Abstract
Despite decades of research and evidence-based mitigation strategies, disparities in access to transplantation persist for all organ types and in all stages of the transplant process. Although some strategies have shown promise for alleviating disparities, others have fallen short of the equity goal by providing the same tools and resources to all rather than tailoring the tools and resources to one's circumstances. Innovative solutions that engage all stakeholders are needed to achieve equity regardless of race, sex, age, socioeconomic status, or geography. Mitigation of disparities is paramount to ensure fair and equitable access for those with end-stage disease and to preserve the trust of the public, upon whom we rely for their willingness to donate organs. In this overview, we present a summary of recent literature demonstrating persistent disparities by stage in the transplant process, along with policies and interventions that have been implemented to combat these disparities and hypotheses for why some strategies have been more effective than others. We conclude with future directions that have been proposed by experts in the field and how these suggested strategies may help us finally arrive at equity in transplantation.
Collapse
Affiliation(s)
- Rhiannon D. Reed
- Comprehensive Transplant Institute, University of Alabama at Birmingham, Birmingham, AL
| | - Jayme E. Locke
- Comprehensive Transplant Institute, University of Alabama at Birmingham, Birmingham, AL
| |
Collapse
|
11
|
Garg AX, Yohanna S, Naylor KL, McKenzie SQ, Mucsi I, Dixon SN, Luo B, Sontrop JM, Beaucage M, Belenko D, Coghlan C, Cooper R, Elliott L, Getchell L, Heale E, Ki V, Nesrallah G, Patzer RE, Presseau J, Reich M, Treleaven D, Wang C, Waterman AD, Zaltzman J, Blake PG. Effect of a Novel Multicomponent Intervention to Improve Patient Access to Kidney Transplant and Living Kidney Donation: The EnAKT LKD Cluster Randomized Clinical Trial. JAMA Intern Med 2023; 183:1366-1375. [PMID: 37922156 PMCID: PMC10696487 DOI: 10.1001/jamainternmed.2023.5802] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.5] [Reference Citation Analysis] [Abstract] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 07/17/2023] [Accepted: 08/30/2023] [Indexed: 11/05/2023]
Abstract
Importance Patients with advanced chronic kidney disease (CKD) have the best chance for a longer and healthier life if they receive a kidney transplant. However, many barriers prevent patients from receiving a transplant. Objectives To evaluate the effect of a multicomponent intervention designed to target several barriers that prevent eligible patients from completing key steps toward receiving a kidney transplant. Design, Setting, and Participants This pragmatic, 2-arm, parallel-group, open-label, registry-based, superiority, cluster randomized clinical trial included all 26 CKD programs in Ontario, Canada, from November 1, 2017, to December 31, 2021. These programs provide care for patients with advanced CKD (patients approaching the need for dialysis or receiving maintenance dialysis). Interventions Using stratified, covariate-constrained randomization, allocation of the CKD programs at a 1:1 ratio was used to compare the multicomponent intervention vs usual care for 4.2 years. The intervention had 4 main components, (1) administrative support to establish local quality improvement teams; (2) transplant educational resources; (3) an initiative for transplant recipients and living donors to share stories and experiences; and (4) program-level performance reports and oversight by administrative leaders. Main Outcomes and Measures The primary outcome was the rate of steps completed toward receiving a kidney transplant. Each patient could complete up to 4 steps: step 1, referred to a transplant center for evaluation; step 2, had a potential living donor contact a transplant center for evaluation; step 3, added to the deceased donor waitlist; and step 4, received a transplant from a living or deceased donor. Results The 26 CKD programs (13 intervention, 13 usual care) during the trial period included 20 375 potentially transplant-eligible patients with advanced CKD (intervention group [n = 9780 patients], usual-care group [n = 10 595 patients]). Despite evidence of intervention uptake, the step completion rate did not significantly differ between the intervention vs usual-care groups: 5334 vs 5638 steps; 24.8 vs 24.1 steps per 100 patient-years; adjusted hazard ratio, 1.00 (95% CI, 0.87-1.15). Conclusions and Relevance This novel multicomponent intervention did not significantly increase the rate of completed steps toward receiving a kidney transplant. Improving access to transplantation remains a global priority that requires substantial effort. Trial Registration ClinicalTrials.gov Identifier: NCT03329521.
Collapse
Affiliation(s)
- Amit X. Garg
- Division of Nephrology, Department of Medicine, McMaster University, Hamilton, Ontario, Canada
- Lawson Health Research Institute and London Health Sciences Centre, London, Ontario, Canada
- ICES, Ontario, Canada
- Department of Epidemiology and Biostatistics, Schulich School of Medicine and Dentistry, Western University, London, Ontario, Canada
- Kidney Patient & Donor Alliance, Canada
- Transplant Ambassador Program, Ontario, Canada
| | - Seychelle Yohanna
- Division of Nephrology, Department of Medicine, McMaster University, Hamilton, Ontario, Canada
| | - Kyla L. Naylor
- Lawson Health Research Institute and London Health Sciences Centre, London, Ontario, Canada
- ICES, Ontario, Canada
- Department of Epidemiology and Biostatistics, Schulich School of Medicine and Dentistry, Western University, London, Ontario, Canada
| | - Susan Q. McKenzie
- Kidney Patient & Donor Alliance, Canada
- Transplant Ambassador Program, Ontario, Canada
| | - Istvan Mucsi
- Ajmera Transplant Centre, University Health Network, Toronto, Ontario, Canada
- Division of Nephrology, Department of Medicine, University of Toronto, Toronto, Ontario, Canada
| | - Stephanie N. Dixon
- Lawson Health Research Institute and London Health Sciences Centre, London, Ontario, Canada
- ICES, Ontario, Canada
- Department of Epidemiology and Biostatistics, Schulich School of Medicine and Dentistry, Western University, London, Ontario, Canada
| | - Bin Luo
- Lawson Health Research Institute and London Health Sciences Centre, London, Ontario, Canada
- ICES, Ontario, Canada
| | - Jessica M. Sontrop
- Lawson Health Research Institute and London Health Sciences Centre, London, Ontario, Canada
- Department of Epidemiology and Biostatistics, Schulich School of Medicine and Dentistry, Western University, London, Ontario, Canada
| | - Mary Beaucage
- Patient Governance Circle, Indigenous Peoples Engagement and Research Council and Executive Committee, Can-Solve CKD, Vancouver, British Columbia, Canada
- Provincial Patient and Family Advisory Council, Ontario Renal Network, Toronto, Ontario, Canada
- Patient co-lead Theme 1–Improve a Culture of Donation, Canadian Donation and Transplantation Research Program, Edmonton, Alberta, Canada
| | - Dmitri Belenko
- Division of Nephrology, University of Toronto, Toronto, Ontario, Canada
| | - Candice Coghlan
- Centre for Living Organ Donation, University Health Network, Toronto, Ontario, Canada
| | - Rebecca Cooper
- Ontario Renal Network, Toronto, Ontario, Canada
- Trillium Gift of Life Network, Ontario Health, Toronto, Ontario, Canada
| | - Lori Elliott
- Ontario Renal Network, Ontario Health, Toronto, Ontario, Canada
| | - Leah Getchell
- Lawson Health Research Institute and London Health Sciences Centre, London, Ontario, Canada
- Can-SOLVE CKD Network, Vancouver BC, Canada
| | - Esti Heale
- Ontario Renal Network, Ontario Health, Toronto, Ontario, Canada
| | - Vincent Ki
- Ontario Renal Network, Ontario Health, Toronto, Ontario, Canada
- Trillium Health Partners, Mississauga, Ontario, Canada
| | - Gihad Nesrallah
- Division of Nephrology, University of Toronto, Toronto, Ontario, Canada
- Department of Medicine, Humber River Regional Hospital, Toronto, Ontario, Canada
| | - Rachel E. Patzer
- Regenstrief Institute, Indianapolis, Indiana
- Department of Surgery, Division of Transplantation, Indiana University School of Medicine, Indianapolis
| | - Justin Presseau
- Clinical Epidemiology Program, Ottawa Health Research Institute, Ottawa, Ontario, Canada
- School of Epidemiology and Public Health, University of Ottawa, Ontario, Canada
| | - Marian Reich
- Canadians Seeking Solutions and Innovations to Overcome Chronic Kidney Disease (Can-Solve CKD), Patient Council, Vancouver, British Columbia, Canada
| | - Darin Treleaven
- Trillium Gift of Life Network, Ontario Health, Toronto, Ontario, Canada
- McMaster University, Hamilton, Ontario, Canada
| | - Carol Wang
- Lawson Health Research Institute and London Health Sciences Centre, London, Ontario, Canada
- Division of Nephrology, Department of Medicine, Schulich School of Medicine and Dentistry, Western University, London, Ontario, Canada
- Department of Research Methods, Evidence and Uptake, Faculty of Health Sciences, McMaster University, Hamilton, Ontario, Canada
| | - Amy D. Waterman
- Department of Surgery and J.C. Walter Jr. Transplant Center, Houston Methodist Hospital, Houston, Texas
| | - Jeffrey Zaltzman
- Trillium Gift of Life Network, Ontario Health, Toronto, Ontario, Canada
- Division of Nephrology, St. Michael’s Hospital, Toronto, Ontario, Canada
| | - Peter G. Blake
- Lawson Health Research Institute and London Health Sciences Centre, London, Ontario, Canada
- Ontario Renal Network, Ontario Health, Toronto, Ontario, Canada
- Division of Nephrology, Department of Medicine, Schulich School of Medicine and Dentistry, Western University, London, Ontario, Canada
| |
Collapse
|
12
|
McElroy LM, Schappe T, Mohottige D, Davis L, Peskoe SB, Wang V, Pendergast J, Boulware LE. Racial Equity in Living Donor Kidney Transplant Centers, 2008-2018. JAMA Netw Open 2023; 6:e2347826. [PMID: 38100105 PMCID: PMC10724764 DOI: 10.1001/jamanetworkopen.2023.47826] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 07/30/2023] [Accepted: 10/30/2023] [Indexed: 12/18/2023] Open
Abstract
Importance It is unclear whether center-level factors are associated with racial equity in living donor kidney transplant (LDKT). Objective To evaluate center-level factors and racial equity in LDKT during an 11-year time period. Design, Setting, and Participants A retrospective cohort longitudinal study was completed in February 2023, of US transplant centers with at least 12 annual LDKTs from January 1, 2008, to December 31, 2018, identified in the Health Resources Services Administration database and linked to the US Renal Data System and the Scientific Registry of Transplant Recipients. Main Outcomes and Measures Observed and model-based estimated Black-White mean LDKT rate ratios (RRs), where an RR of 1 indicates racial equity and values less than 1 indicate a lower rate of LDKT of Black patients compared with White patients. Estimated yearly best-case center-specific LDKT RRs between Black and White individuals, where modifiable center characteristics were set to values that would facilitate access to LDKT. Results The final cohorts of patients included 394 625 waitlisted adults, of whom 33.1% were Black and 66.9% were White, and 57 222 adult LDKT recipients, of whom 14.1% were Black and 85.9% were White. Among 89 transplant centers, estimated yearly center-level RRs between Black and White individuals accounting for center and population characteristics ranged from 0.0557 in 2008 to 0.771 in 2018. The yearly median RRs ranged from 0.216 in 2016 to 0.285 in 2010. Model-based estimations for the hypothetical best-case scenario resulted in little change in the minimum RR (from 0.0557 to 0.0549), but a greater positive shift in the maximum RR from 0.771 to 0.895. Relative to the observed 582 LDKT in Black patients and 3837 in White patients, the 2018 hypothetical model estimated an increase of 423 (a 72.7% increase) LDKTs for Black patients and of 1838 (a 47.9% increase) LDKTs for White patients. Conclusions and Relevance In this cohort study of patients with kidney failure, no substantial improvement occurred over time either in the observed or the covariate-adjusted estimated RRs. Under the best-case hypothetical estimations, modifying centers' participation in the paired exchange and voucher programs and increased access to public insurance may contribute to improved racial equity in LDKT. Additional work is needed to identify center-level and program-specific strategies to improve racial equity in access to LDKT.
Collapse
Affiliation(s)
- Lisa M. McElroy
- Department of Surgery, Duke University School of Medicine, Durham, North Carolina
| | - Tyler Schappe
- Department of Biostatistics and Bioinformatics, Duke University School of Medicine, Durham, North Carolina
| | - Dinushika Mohottige
- Institute of Health Equity Research and Barbara T. Murphy Division of Nephrology, Icahn School of Medicine at Mount Sinai, New York, New York
| | - LaShara Davis
- Department of Surgery and J. C. Walter Jr Transplant Center, Houston Methodist Hospital, Houston, Texas
| | - Sarah B. Peskoe
- Department of Biostatistics and Bioinformatics, Duke University School of Medicine, Durham, North Carolina
| | - Virginia Wang
- Department of Population Health Sciences, Duke University School of Medicine, Durham, North Carolina
| | - Jane Pendergast
- Department of Biostatistics and Bioinformatics, Duke University School of Medicine, Durham, North Carolina
| | - L. Ebony Boulware
- Wake Forest University School of Medicine, Winston Salem, North Carolina
| |
Collapse
|
13
|
Selzler AM, Davoodi PM, Klarenbach S, Lam NN, Smith T, Ackroyd A, Wiebe N, Corradetti B, Ferdinand S, Iyekekpolor D, Smith G, Verdin N, Bello AK, Wen K, Shojai S. Multidisciplinary Support To Access living donor Kidney Transplant (MuST AKT): A Clinical Research Protocol for a Pilot Randomized Controlled Trial to Increase Living Kidney Donation. Can J Kidney Health Dis 2023; 10:20543581231205340. [PMID: 37920779 PMCID: PMC10619336 DOI: 10.1177/20543581231205340] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Grants] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 03/22/2023] [Accepted: 06/07/2023] [Indexed: 11/04/2023] Open
Abstract
Background Living donor kidney transplantation (LDKT) is the optimal treatment for eligible patients with kidney failure, although it is underutilized. Contextually tailored patient- and family-centered interventions may be effective to increase LDKT. Objective We outline a protocol to test the feasibility of the Multidisciplinary Support To Access living donor Kidney Transplant (MuST AKT) intervention designed to increase LDKT. Design Non-blinded single-center pilot randomized controlled trial with a qualitative interview component. Setting Academic transplant referral center in Northern Alberta Region with a population of more than 2 million in its catchment area. Patients English-speaking patients of the age range 18 to 75 years who are referred for kidney transplantation are eligible to participate. Measurements Feasibility will be assessed by indicators of recruitment, retention, and completion rates, treatment fidelity, adherence to intervention, engagement in intervention, and acceptability. Methods Participants will be randomly assigned 1:1 to either standard care (control) or the experimental group who receive standard care plus the MuST AKT intervention, a person-centered program designed to assist and enable the kidney transplant candidate to achieve what is required to receive an LDKT. The intervention consists of an introductory session and 4 intervention sessions delivered in-person or virtually. Limitations Inferences cannot be drawn regarding the efficacy/effectiveness of the MuST AKT intervention. This study is non-blinded. Conclusions This pilot study is the first step in our broader initiative to increase LDKT in our health care jurisdiction. The results of this study will be used to inform the development of a future definitive randomized controlled trial. Trial registration number NCT04666545.
Collapse
Affiliation(s)
- Anne-Marie Selzler
- Kidney Health Section, Medicine Strategic Clinical Network, Alberta Health Services, Alberta, Canada
| | | | - Scott Klarenbach
- Kidney Health Section, Medicine Strategic Clinical Network, Alberta Health Services, Alberta, Canada
- Division of Nephrology, Department of Medicine, University of Alberta, Edmonton, Alberta, Canada
| | - Ngan N. Lam
- Division of Nephrology, Cumming School of Medicine, University of Calgary, Alberta, Canada
| | - Terry Smith
- Kidney Health Section, Medicine Strategic Clinical Network, Alberta Health Services, Alberta, Canada
| | - Abigail Ackroyd
- Division of Nephrology, Department of Medicine, University of Alberta, Edmonton, Alberta, Canada
| | - Natasha Wiebe
- Kidney Health Research Group, Department of Medicine, University of Alberta, Edmonton, Alberta, Canada
| | - Bonnie Corradetti
- Kidney Health Section, Medicine Strategic Clinical Network, Alberta Health Services, Alberta, Canada
| | - Sharron Ferdinand
- Social Work—Transplant Services, University of Alberta Hospital, Alberta Health Services, Edmonton, Alberta, Canada
| | - Dorothy Iyekekpolor
- Social Work—Transplant Services, University of Alberta Hospital, Alberta Health Services, Edmonton, Alberta, Canada
| | - Gordon Smith
- Social Work—Alberta Kidney Care North, Grey Nuns Hospital, Alberta Health Services, Edmonton, Alberta, Canada
| | - Nancy Verdin
- Kidney Health Section, Medicine Strategic Clinical Network, Alberta Health Services, Alberta, Canada
| | - Aminu K. Bello
- Division of Nephrology, Department of Medicine, University of Alberta, Edmonton, Alberta, Canada
| | - Kevin Wen
- Division of Nephrology, Department of Medicine, University of Alberta, Edmonton, Alberta, Canada
| | - Soroush Shojai
- Division of Nephrology, Department of Medicine, University of Alberta, Edmonton, Alberta, Canada
| | | |
Collapse
|
14
|
Thongprayoon C, Tangpanithandee S, Jadlowiec CC, Mao SA, Mao MA, Vaitla P, Acharya PC, Leeaphorn N, Kaewput W, Pattharanitima P, Suppadungsuk S, Krisanapan P, Nissaisorakarn P, Cooper M, Craici IM, Cheungpasitporn W. Characteristics of Kidney Transplant Recipients with Prolonged Pre-Transplant Dialysis Duration as Identified by Machine Learning Consensus Clustering: Pathway to Personalized Care. J Pers Med 2023; 13:1273. [PMID: 37623523 PMCID: PMC10455164 DOI: 10.3390/jpm13081273] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.5] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 07/29/2023] [Revised: 08/16/2023] [Accepted: 08/17/2023] [Indexed: 08/26/2023] Open
Abstract
Longer pre-transplant dialysis duration is known to be associated with worse post-transplant outcomes. Our study aimed to cluster kidney transplant recipients with prolonged dialysis duration before transplant using an unsupervised machine learning approach to better assess heterogeneity within this cohort. We performed consensus cluster analysis based on recipient-, donor-, and transplant-related characteristics in 5092 kidney transplant recipients who had been on dialysis ≥ 10 years prior to transplant in the OPTN/UNOS database from 2010 to 2019. We characterized each assigned cluster and compared the posttransplant outcomes. Overall, the majority of patients with ≥10 years of dialysis duration were black (52%) or Hispanic (25%), with only a small number (17.6%) being moderately sensitized. Within this cohort, three clinically distinct clusters were identified. Cluster 1 patients were younger, non-diabetic and non-sensitized, had a lower body mass index (BMI) and received a kidney transplant from younger donors. Cluster 2 recipients were older, unsensitized and had a higher BMI; they received kidney transplant from older donors. Cluster 3 recipients were more likely to be female with a higher PRA. Compared to cluster 1, cluster 2 had lower 5-year death-censored graft (HR 1.40; 95% CI 1.16-1.71) and patient survival (HR 2.98; 95% CI 2.43-3.68). Clusters 1 and 3 had comparable death-censored graft and patient survival. Unsupervised machine learning was used to characterize kidney transplant recipients with prolonged pre-transplant dialysis into three clinically distinct clusters with variable but good post-transplant outcomes. Despite a dialysis duration ≥ 10 years, excellent outcomes were observed in most recipients, including those with moderate sensitization. A disproportionate number of minority recipients were observed within this cohort, suggesting multifactorial delays in accessing kidney transplantation.
Collapse
Affiliation(s)
- Charat Thongprayoon
- Division of Nephrology and Hypertension, Department of Medicine, Mayo Clinic, Rochester, MN 55905, USA; (S.T.); (S.S.); (P.K.); (I.M.C.); (W.C.)
| | - Supawit Tangpanithandee
- Division of Nephrology and Hypertension, Department of Medicine, Mayo Clinic, Rochester, MN 55905, USA; (S.T.); (S.S.); (P.K.); (I.M.C.); (W.C.)
- Chakri Naruebodindra Medical Institute, Faculty of Medicine Ramathibodi Hospital, Mahidol University, Samut Prakan 10540, Thailand
| | - Caroline C. Jadlowiec
- Division of Nephrology, University of Mississippi Medical Center, Jackson, MS 39216, USA;
| | - Shennen A. Mao
- Division of Transplant Surgery, Mayo Clinic, Phoenix, AZ 85054, USA;
| | - Michael A. Mao
- Division of Transplant Surgery, Mayo Clinic, Jacksonville, FL 32224, USA;
| | - Pradeep Vaitla
- Division of Nephrology and Hypertension, Department of Medicine, Mayo Clinic, Jacksonville, FL 32224, USA;
| | - Prakrati C. Acharya
- Division of Nephrology, Texas Tech Health Sciences Center El Paso, El Paso, TX 79905, USA;
| | - Napat Leeaphorn
- Renal Transplant Program, University of Missouri-Kansas City School of Medicine/Saint Luke’s Health System, Kansas City, MO 64108, USA;
| | - Wisit Kaewput
- Department of Military and Community Medicine, Phramongkutklao College of Medicine, Bangkok 10400, Thailand;
| | - Pattharawin Pattharanitima
- Division of Nephrology, Department of Internal Medicine, Faculty of Medicine Thammasat University, Pathum Thani 12120, Thailand;
| | - Supawadee Suppadungsuk
- Division of Nephrology and Hypertension, Department of Medicine, Mayo Clinic, Rochester, MN 55905, USA; (S.T.); (S.S.); (P.K.); (I.M.C.); (W.C.)
- Chakri Naruebodindra Medical Institute, Faculty of Medicine Ramathibodi Hospital, Mahidol University, Samut Prakan 10540, Thailand
| | - Pajaree Krisanapan
- Division of Nephrology and Hypertension, Department of Medicine, Mayo Clinic, Rochester, MN 55905, USA; (S.T.); (S.S.); (P.K.); (I.M.C.); (W.C.)
- Division of Nephrology, Department of Internal Medicine, Faculty of Medicine Thammasat University, Pathum Thani 12120, Thailand;
- Division of Nephrology, Department of Internal Medicine, Thammasat University Hospital, Pathum Thani 12120, Thailand
| | - Pitchaphon Nissaisorakarn
- Deparment of Medicine, Division of Nephrology, Massachusetts General Hospital, Harvard Medical School, Boston, MA 02114, USA;
| | - Matthew Cooper
- Department of Surgery, Medical College of Wisconsin, Milwaukee, WI 53226, USA;
| | - Iasmina M. Craici
- Division of Nephrology and Hypertension, Department of Medicine, Mayo Clinic, Rochester, MN 55905, USA; (S.T.); (S.S.); (P.K.); (I.M.C.); (W.C.)
| | - Wisit Cheungpasitporn
- Division of Nephrology and Hypertension, Department of Medicine, Mayo Clinic, Rochester, MN 55905, USA; (S.T.); (S.S.); (P.K.); (I.M.C.); (W.C.)
| |
Collapse
|
15
|
Campbell ZC, Dawson JK, Kirkendall SM, McCaffery KJ, Jansen J, Campbell KL, Lee VW, Webster AC. Interventions for improving health literacy in people with chronic kidney disease. Cochrane Database Syst Rev 2022; 12:CD012026. [PMID: 36472416 PMCID: PMC9724196 DOI: 10.1002/14651858.cd012026.pub2] [Citation(s) in RCA: 8] [Impact Index Per Article: 2.7] [Reference Citation Analysis] [Abstract] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 12/12/2022]
Abstract
BACKGROUND Low health literacy affects 25% of people with chronic kidney disease (CKD) and is associated with increased morbidity and death. Improving health literacy is a recognised priority, but effective interventions are not clear. OBJECTIVES This review looked the benefits and harms of interventions for improving health literacy in people with CKD. SEARCH METHODS We searched the Cochrane Kidney and Transplant Register of Studies up to 12 July 2022 through contact with the Information Specialist using search terms relevant to this review. Studies in the Register are identified through searches of CENTRAL, MEDLINE, and EMBASE, conference proceedings, the International Clinical Trials Register (ICTRP) Search Portal and ClinicalTrials.gov. We also searched MEDLINE (OVID) and EMBASE (OVID) for non-randomised studies. SELECTION CRITERIA We included randomised controlled trials (RCTs) and non-randomised studies that assessed interventions aimed at improving health literacy in people with CKD. DATA COLLECTION AND ANALYSIS Two authors independently assessed studies for eligibility and performed risk of bias analysis. We classified studies as either interventions aimed at improving aspects of health literacy or interventions targeting a population of people with poor health literacy. The interventions were further sub-classified in terms of the type of intervention (educational, self-management training, or educational with self-management training). Results were expressed as mean difference (MD) or standardised mean difference (SMD) with 95% confidence intervals (CI) for continuous outcomes and risk ratios (RR) with 95% CI for dichotomous outcomes. MAIN RESULTS We identified 120 studies (21,149 participants) which aimed to improve health literacy. There were 107 RCTs and 13 non-randomised studies. No studies targeted low literacy populations. For the RCTs, selection bias was low or unclear in 94% of studies, performance bias was high in 86% of studies, detection bias was high in 86% of studies reporting subjective outcomes and low in 93% of studies reporting objective outcomes. Attrition and other biases were low or unclear in 86% and 78% of studies, respectively. Compared to usual care, low certainty evidence showed educational interventions may increase kidney-related knowledge (14 RCTs, 2632 participants: SMD 0.99, 95% CI 0.69 to 1.32; I² = 94%). Data for self-care, self-efficacy, quality of life (QoL), death, estimated glomerular filtration rate (eGFR) and hospitalisations could not be pooled or was not reported. Compared to usual care, low-certainty evidence showed self-management interventions may improve self-efficacy (5 RCTs, 417 participants: SMD 0.58, 95% CI 0.13 to 1.03; I² = 74%) and QoL physical component score (3 RCTs, 131 participants: MD 4.02, 95% CI 1.09 to 6.94; I² = 0%). There was moderate-certainty evidence that self-management interventions probably did not slow the decline in eGFR after one year (3 RCTs, 855 participants: MD 1.53 mL/min/1.73 m², 95% CI -1.41 to 4.46; I² = 33%). Data for knowledge, self-care behaviour, death and hospitalisations could not be pooled or was not reported. Compared to usual care, low-certainty evidence showed educational with self-management interventions may increase knowledge (15 RCTs, 2185 participants: SMD 0.65, 95% CI 0.36 to 0.93; I² = 90%), improve self-care behaviour scores (4 RCTs, 913 participants: SMD 0.91, 95% CI 0.00 to 1.82; I² =97%), self-efficacy (8 RCTs, 687 participants: SMD 0.50, 95% CI 0.10 to 0.89; I² = 82%), improve QoL physical component score (3 RCTs, 2771 participants: MD 2.56, 95% CI 1.73 to 3.38; I² = 0%) and may make little or no difference to slowing the decline of eGFR (4 RCTs, 618 participants: MD 4.28 mL/min/1.73 m², 95% CI -0.03 to 8.85; I² = 43%). Moderate-certainty evidence shows educational with self-management interventions probably decreases the risk of death (any cause) (4 RCTs, 2801 participants: RR 0.73, 95% CI 0.53 to 1.02; I² = 0%). Data for hospitalisation could not be pooled. AUTHORS' CONCLUSIONS Interventions to improve aspects of health literacy are a very broad category, including educational interventions, self-management interventions and educational with self-management interventions. Overall, this type of health literacy intervention is probably beneficial in this cohort however, due to methodological limitations and high heterogeneity in interventions and outcomes, the evidence is of low certainty.
Collapse
Affiliation(s)
- Zoe C Campbell
- Sydney School of Public Health, Faculty of Medicine and Health, The University of Sydney, Sydney, Australia
| | - Jessica K Dawson
- Westmead Clinical School, The University of Sydney at Westmead, Westmead, Australia
- Department of Nutrition and Dietetics, St George Hospital, Kogarah, Australia
| | | | - Kirsten J McCaffery
- Sydney School of Public Health, Faculty of Medicine and Health, The University of Sydney, Sydney, Australia
| | - Jesse Jansen
- Sydney School of Public Health, Faculty of Medicine and Health, The University of Sydney, Sydney, Australia
- Department of Family Medicine, School Care and Public Health Research Institute (CAPHRI), Maastricht University, Maastricht, Netherlands
- Faculty of Health Medicine and Life Sciences (FHML), Maastricht University, Maastricht, Netherlands
| | - Katrina L Campbell
- Centre for Applied Health Economics, Menzies Health Institute Queensland, Griffith University, Nathan, Australia
| | - Vincent Ws Lee
- Westmead Clinical School, The University of Sydney at Westmead, Westmead, Australia
- Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, Australia
| | - Angela C Webster
- Sydney School of Public Health, Faculty of Medicine and Health, The University of Sydney, Sydney, Australia
- NHMRC Clinical Trials Centre, Faculty of Medicine and Health, The University of Sydney, Sydney, Australia
- Westmead Applied Research Centre, The University of Sydney at Westmead, Westmead, Australia
- Department of Transplant and Renal Medicine, Westmead Hospital, Westmead, Australia
| |
Collapse
|
16
|
Loor JM, Judd NS, Rice CM, Perea DD, Croswell E, Singh PP, Unruh M, Zhu Y, Sehgal AR, Goff SL, Bryce CL, Myaskovsky L. Protocol for the AKT-MP trial: Access to Kidney Transplantation in Minority Populations. Contemp Clin Trials Commun 2022; 30:101015. [PMID: 36246997 PMCID: PMC9562954 DOI: 10.1016/j.conctc.2022.101015] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Grants] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 05/23/2022] [Revised: 09/02/2022] [Accepted: 10/01/2022] [Indexed: 11/01/2022] Open
Abstract
Background Kidney transplant (KT) is the optimal treatment for kidney failure (KF), and although completion of KT evaluation is an essential step in gaining access to transplantation, the process is lengthy, time consuming, and burdensome. Furthermore, despite similar referral rates to non-Hispanic Whites, both Hispanic/Latinos and American Indians are less likely to be wait-listed or to undergo KT. Methods The Access to Kidney Transplantation in Minority Populations (AKT-MP) Trial compares two patient-centered methods to facilitate KT evaluation: kidney transplant fast track (KTFT), a streamlined KT evaluation process; and peer navigators (PN), a peer-assisted evaluation program that incorporates motivational interviewing. This pragmatic randomized trial will use a comparative effectiveness approach to assess whether KTFT or PN can help patients overcome barriers to transplant listing. We will randomly assign patients to the two conditions. We will track participants' medical records and conduct surveys prior to their initial evaluation clinic visit and again after they complete or discontinue evaluation. Conclusion Our aims are to (1) compare KTFT and PN to assess improvements in kidney transplant (KT) related outcomes and cost effectiveness; (2) examine how each approach effects changes in cultural/contextual factors, KT concerns, KT knowledge, and KT ambivalence; and (3) develop a framework for widespread implementation of either approach. The results of this trial will provide key information for facilitating the evaluation process, improving patient care, and decreasing disparities in KT.
Collapse
Affiliation(s)
- Jamie M. Loor
- Center for Healthcare Equity in Kidney Disease (CHEK-D), University of New Mexico Health Science Center, United States
| | - Nila S. Judd
- Center for Healthcare Equity in Kidney Disease (CHEK-D), University of New Mexico Health Science Center, United States
| | - Claudia M. Rice
- Center for Healthcare Equity in Kidney Disease (CHEK-D), University of New Mexico Health Science Center, United States
| | - Diana D. Perea
- Center for Healthcare Equity in Kidney Disease (CHEK-D), University of New Mexico Health Science Center, United States
| | - Emilee Croswell
- Department of Psychiatry, University of Pittsburgh, United States
| | - Pooja P. Singh
- Department of Internal Medicine, University of New Mexico, School of Medicine, United States
| | - Mark Unruh
- Department of Internal Medicine, University of New Mexico, School of Medicine, United States
| | - Yiliang Zhu
- Department of Internal Medicine, University of New Mexico, School of Medicine, United States
| | - Ashwini R. Sehgal
- Department of Medicine, Case Western Reserve University, United States
| | - Sarah L. Goff
- Department of Health Policy and Management, University of Massachusetts, Amherst, United States
| | - Cindy L. Bryce
- Department of Health Policy and Management, University of Pittsburgh, School of Public Health, United States
| | - Larissa Myaskovsky
- Center for Healthcare Equity in Kidney Disease (CHEK-D), University of New Mexico Health Science Center, United States
- Department of Internal Medicine, University of New Mexico, School of Medicine, United States
| |
Collapse
|
17
|
Engels N, de Graav GN, van der Nat P, van den Dorpel M, Stiggelbout AM, Bos WJ. Shared decision-making in advanced kidney disease: a scoping review. BMJ Open 2022; 12:e055248. [PMID: 36130746 PMCID: PMC9494569 DOI: 10.1136/bmjopen-2021-055248] [Citation(s) in RCA: 9] [Impact Index Per Article: 3.0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 07/09/2021] [Accepted: 05/31/2022] [Indexed: 11/25/2022] Open
Abstract
OBJECTIVES To provide a comprehensive overview of interventions that support shared decision-making (SDM) for treatment modality decisions in advanced kidney disease (AKD). To provide summarised information on their content, use and reported results. To provide an overview of interventions currently under development or investigation. DESIGN The JBI methodology for scoping reviews was followed. This review conforms to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews (PRISMA-ScR) checklist. DATA SOURCES MEDLINE, Embase, Web of Science, Cochrane Library, Emcare, PsycINFO, PROSPERO and Academic Search Premier for peer-reviewed literature. Other online databases (eg, clinicaltrials.gov, OpenGrey) for grey literature. ELIGIBILITY FOR INCLUSION Records in English with a study population of patients >18 years of age with an estimated glomerular filtration rate <30 mL/min/1.73 m2. Records had to be on the subject of SDM, or explicitly mention that the intervention reported on could be used to support SDM for treatment modality decisions in AKD. DATA EXTRACTION AND SYNTHESIS Two reviewers independently screened and selected records for data extraction. Interventions were categorised as prognostic tools (PTs), educational programmes (EPs), patient decision aids (PtDAs) or multicomponent initiatives (MIs). Interventions were subsequently categorised based on the decisions they were developed to support. RESULTS One hundred forty-five interventions were identified in a total of 158 included records: 52 PTs, 51 EPs, 29 PtDAs and 13 MIs. Sixteen (n=16, 11%) were novel interventions currently under investigation. Forty-six (n=46, 35.7%) were reported to have been implemented in clinical practice. Sixty-seven (n=67, 51.9%) were evaluated for their effects on outcomes in the intended users. CONCLUSION There is no conclusive evidence on which intervention is the most efficacious in supporting SDM for treatment modality decisions in AKD. There is a lot of variation in selected outcomes, and the body of evidence is largely based on observational research. In addition, the effects of these interventions on SDM are under-reported.
Collapse
Affiliation(s)
- Noel Engels
- Department of Shared Decision-Making and Value-Based Health Care, Santeon, Utrecht, The Netherlands
- Internal Medicine, Leiden University Medical Center, Leiden, The Netherlands
- Internal Medicine, Maasstad Hospital, Rotterdam, the Netherlands
| | | | - Paul van der Nat
- Department of Value-Based Health Care, Sint Antonius Hospital, Nieuwegein, The Netherlands
| | | | - Anne M Stiggelbout
- Department of Biomedical Data Sciences, Leiden University Medical Center, Leiden, The Netherlands
| | - Willem Jan Bos
- Internal Medicine, Leiden University Medical Center, Leiden, The Netherlands
- Department of Value-Based Health Care, Sint Antonius Hospital, Nieuwegein, The Netherlands
| |
Collapse
|
18
|
Redeker S, Massey EK, van Merweland RG, Weimar W, Ismail S, Busschbach J. Induced Demand in Kidney Replacement Therapy. Health Policy 2022; 126:1062-1068. [DOI: 10.1016/j.healthpol.2022.07.011] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 12/02/2021] [Revised: 07/23/2022] [Accepted: 07/28/2022] [Indexed: 11/25/2022]
|
19
|
Waterman AD, Nair D, Purnajo I, Cavanaugh KL, Mittman BS, Peipert JD. The Knowledge Assessment of Renal Transplantation (KART) 2.0: Development and Validation of CKD and Transplant Knowledge Scales. Clin J Am Soc Nephrol 2022; 17:555-564. [PMID: 35332061 PMCID: PMC8993477 DOI: 10.2215/cjn.11490821] [Citation(s) in RCA: 9] [Impact Index Per Article: 3.0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 08/30/2021] [Accepted: 02/18/2022] [Indexed: 12/13/2022]
Abstract
BACKGROUND AND OBJECTIVES Many individuals with kidney disease, particularly those belonging to racial and ethnic minority groups and whose primary language is not English, lack knowledge related to kidney disease symptoms, physiologic functions of the kidney, and benefits and risks of kidney transplantation. Valid instruments to assess patients' knowledge of CKD and kidney transplantation are needed. DESIGN, SETTING, PARTICIPANTS, & MEASUREMENTS Using a sample of 977 patients with stages 3-5 CKD in the Kaiser Permanente health system, we developed the Knowledge Assessment of Renal Transplantation (KART) 2.0 instrument. We conducted cognitive interviews followed by item response theory (IRT) to reduce 48 candidate items. Construct validity was tested by examining differences in scores between patients who spent <1 and ≥1 hour receiving CKD and transplant education. RESULTS Cognitive interviews modified four items and omitted 11. IRT analyses resulted in two scales: the KART 2.0-Transplant Knowledge Scale (16 items; Cronbach's α=0.8) and the KART 2.0-CKD Knowledge Scale (nine items; Cronbach's α=0.79). Differential item functioning showed that the scales were unbiased to capture knowledge across self-identified race, primary language, CKD stage, and sex. Both scales distinguished patients who had spent <1 and ≥1 hour speaking with health professionals (effect size [ES]=0.33 [transplant], 0.54 [CKD]; P<0.001 for both), reading about kidney disease (ES=0.45 [transplant], 0.62 [CKD]; P<0.001), reading about kidney transplantation (ES=0.67 [transplant], 0.69 [CKD]; P<0.001), and reading about living donor kidney transplant (ES=0.76 [transplant], 0.62 [CKD]; P<0.001). CONCLUSIONS The KART 2.0 is a valid tool to assess patients' knowledge of CKD and kidney transplantation.
Collapse
Affiliation(s)
- Amy D Waterman
- Department of Surgery and J.C. Walter Jr. Transplant Center, Houston Methodist Hospital, Houston, Texas
| | - Devika Nair
- Division of Nephrology and Hypertension, Department of Medicine, Vanderbilt University Medical Center, Nashville, Tennessee
- Vanderbilt O'Brien Center for Kidney Disease, Nashville, Tennessee
| | | | - Kerri L Cavanaugh
- Division of Nephrology and Hypertension, Department of Medicine, Vanderbilt University Medical Center, Nashville, Tennessee
- Vanderbilt O'Brien Center for Kidney Disease, Nashville, Tennessee
- Center for Effective Health Communication, Vanderbilt University Medical Center, Nashville, Tennessee
| | - Brian S Mittman
- Health Services Research and Implementation Science, Department of Research and Evaluation, Kaiser Permanente Southern California, Pasadena, California
| | - John Devin Peipert
- Department of Medical Social Sciences, Feinberg School of Medicine, Northwestern University, Chicago, Illinois
- Northwestern University Transplant Outcomes Research Collaborative, Comprehensive Transplant Center, Feinberg School of Medicine, Chicago, Illinois
| |
Collapse
|
20
|
Khalil K, Brotherton A, Moore S, Evison F, Gallier S, Hodson J, Sharif A. Interaction between socioeconomic deprivation and ethnicity for likelihood of receiving living-donor kidney transplantation. BMC Nephrol 2022; 23:113. [PMID: 35305568 PMCID: PMC8934457 DOI: 10.1186/s12882-022-02742-6] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 11/17/2021] [Accepted: 03/08/2022] [Indexed: 11/10/2022] Open
Abstract
Abstract
Background
The interplay between ethnicity and socioeconomic deprivation for living-donor kidney transplantation (LDKT) opportunities is unclear.
Methods
Data for 2040 consecutive kidney-alone transplant recipients receiving an allograft between 1st January 2007 and 30th June 2020 at a single center were retrospectively analyzed. The associations between the proportions of transplants that were LDKT (versus deceased donation) and both ethnicity and socioeconomic deprivation were assessed, with the latter quantified by the Index of Multiple Deprivation (IMD) quintile.
Results
The cohort comprised recipients of White (64.7%), South Asian (21.7%), Black (7.0%) and other (6.6%) ethnic groups. Recipients tended to be from socioeconomically deprived areas, with the most deprived quintile being the most frequently observed (quintile 1: 38.6% of patients); non-White recipients were significantly more likely to live in socioeconomically deprived areas (p < 0.001). Overall, 36.5% of transplants were LDKT, with this proportion declining progressively with socioeconomic deprivation, from 50.4 to 27.6% in the least versus most deprived IMD quintile (p < 0.001). A significant difference across recipient ethnicities was also observed, with the proportion of LDKTs ranging from 43.2% in White recipients to 17.8% in Black recipients (p < 0.001). Both socioeconomic deprivation (p < 0.001) and ethnicity (p = 0.005) remained significant predictors of LDKT on multivariable analysis, with a significant interaction between these factors also being observed (p < 0.001). Further assessment of this interaction effect found that, whilst there was a marked difference in the proportions of transplants that were LDKT between White versus non-White recipients in the most socioeconomically deprived groups (39.5% versus 19.3%), no such difference was seen in the least deprived recipients (48.5% versus 51.9%).
Conclusions
Whilst both socioeconomic deprivation and non-White ethnicity are independent predictors for lower proportions of LDKTs, the significant interaction between the two factors should be appreciated.
Collapse
|
21
|
Sieverdes JC, Mueller M, Nemeth LS, Patel S, Baliga PK, Treiber FA. A distance-based living donor kidney education program for Black wait-list candidates: A feasibility randomized trial. Clin Transplant 2021; 35:e14426. [PMID: 34269480 PMCID: PMC9888645 DOI: 10.1111/ctr.14426] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.3] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 09/25/2020] [Revised: 05/25/2021] [Accepted: 06/12/2021] [Indexed: 02/02/2023]
Abstract
Addressing racial disparities in living donor kidney transplants (LDKT) among Black patients warrants innovative programs to improve living donation rates. The Living Organ Video Educated Donors (LOVED) program is a 2-arm, culturally-tailored, distance-based, randomized controlled feasibility trial. The group-based, 8-week program used peer-navigator led video chat sessions and web-app video education for Black kidney waitlisted patients from United States southeastern state. Primary feasibility results for LOVED (n = 24) and usual care (n = 24) arms included LOVED program tolerability (i.e., 95.8% retention), program fidelity (i.e., 78.9% video education adherence and 72.1% video chat adherence). LDKT attitudinal and knowledge results favored the LOVED group where a statistically significant effect was reported over 6-months for willingness to approach strangers (estimate ± SE: -1.0 ± .55, F(1, 45.3) = 7.5, P = .009) and self-efficacy to advocate for a LDKT -.81 ± .31, F(1, 45.9) = 15.2, P < .001. Estimates were improved but not statistically significant for willingness to approach family and friends, LDKT knowledge and concerns for living donors (all P's > .088). Secondary measures at 6 months showed an increase in calls for LOVED compared to usual care (P = .008) though no differences were found for transplant center evaluations or LDKTs. Findings imply that LOVED increased screening calls and attitudes to approach potential donors but feasibility outcomes found program materials require modification to increase adherence.
Collapse
Affiliation(s)
- John C. Sieverdes
- College of Charleston, Department of Health and Human Performance, 24 George Street, Charleston, SC 29425-1600,Medical University of South Carolina, College of Medicine, 96 Jonathan Lucas St. Charleston, SC 29425-1600, USA
| | - Martina Mueller
- Medical University of South Carolina, College of Nursing, 99 Jonathan Lucas St. Charleston, SC 29425-1600, USA
| | - Lynne S. Nemeth
- Medical University of South Carolina, College of Nursing, 99 Jonathan Lucas St. Charleston, SC 29425-1600, USA
| | - Sachin Patel
- Medical University of South Carolina, College of Medicine, 96 Jonathan Lucas St. Charleston, SC 29425-1600, USA,Medical University of South Carolina, College of Nursing, 99 Jonathan Lucas St. Charleston, SC 29425-1600, USA
| | - Prabhakar K. Baliga
- Medical University of South Carolina, College of Medicine, 96 Jonathan Lucas St. Charleston, SC 29425-1600, USA
| | - Frank A. Treiber
- Medical University of South Carolina, College of Medicine, 96 Jonathan Lucas St. Charleston, SC 29425-1600, USA,Medical University of South Carolina, College of Nursing, 99 Jonathan Lucas St. Charleston, SC 29425-1600, USA
| |
Collapse
|
22
|
Redeker S, Massey EK, Boonstra C, van Busschbach JJ, Timman R, Brulez HFH, Hollander DAAMJ, Hilbrands LB, Bemelman F, Berger SP, van de Wetering J, van den Dorpel RMA, Dekker-Jansen M, Weimar W, Ismail SY. Implementation of the Kidney Team at Home Intervention: Evaluating Generalizability, Implementation Process, and Effects. Transpl Int 2021; 34:2317-2328. [PMID: 34390041 PMCID: PMC9292401 DOI: 10.1111/tri.14011] [Citation(s) in RCA: 6] [Impact Index Per Article: 1.5] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 03/15/2021] [Revised: 07/02/2021] [Accepted: 08/11/2021] [Indexed: 11/26/2022]
Abstract
Research has shown that a home-based educational intervention for patients with chronic kidney disease results in better knowledge and communication, and more living donor kidney transplantations (LDKT). Implementation research in the field of renal care is almost non-existent. The aims of this study were (1) to demonstrate generalizability, (2) evaluate the implementation process, and (3) to assess the relationship of intervention effects on LDKT-activity. Eight hospitals participated in the project. Patients eligible for all kidney replacement therapies (KRT) were invited to participate. Effect outcomes were KRT-knowledge and KRT-communication, and treatment choice. Feasibility, fidelity and intervention costs were assessed as part of the process evaluation. 332 patients completed the intervention. There was a significant increase in KRT-knowledge and KRT-communication among participants. 129 out of 332 patients (39%) had LDKT-activity, which was in line with the results of the clinical trials. Protocol adherence, knowledge and age were correlated with LDKT-activity. This unique implementation study shows that the results in practice are comparable to the previous trials, and show that the intervention can be implemented, while maintaining quality. Results from the project resulted in the uptake of the intervention in standard care. We urge other countries to investigate the uptake of the intervention.
Collapse
Affiliation(s)
- Steef Redeker
- Erasmus Medical Center, Section of Medical Psychology and Psychotherapy, Department of Psychiatry, Rotterdam, the Netherlands
| | - Emma K Massey
- Erasmus Medical Center, Section of Nephrology and Transplantation, Department of Internal Medicine, the Netherlands
| | - Charlotte Boonstra
- Netherlands Institute for Personality Disorders, De Viersprong, Rotterdam, the Netherlands
| | - Jan J van Busschbach
- Erasmus Medical Center, Section of Medical Psychology and Psychotherapy, Department of Psychiatry, Rotterdam, the Netherlands
| | - Reinier Timman
- Erasmus Medical Center, Section of Medical Psychology and Psychotherapy, Department of Psychiatry, Rotterdam, the Netherlands
| | | | | | - Luuk B Hilbrands
- Radboud university medical center, Radboud Institute for Health Sciences, Department of Nephrology, Nijmegen, the Netherlands
| | - Frederike Bemelman
- Amsterdam UMC, Department of Nephrology, Division of Internal Medicine, Amsterdam, the Netherlands
| | - Stefan P Berger
- University of Groningen, University Medical Center Groningen, Department of Internal Medicine, the Netherlands
| | - Jacqueline van de Wetering
- Erasmus Medical Center, Section of Nephrology and Transplantation, Department of Internal Medicine, the Netherlands
| | | | | | - Willem Weimar
- Erasmus Medical Center, Section of Nephrology and Transplantation, Department of Internal Medicine, the Netherlands
| | - Sohal Y Ismail
- Erasmus Medical Center, Section of Medical Psychology and Psychotherapy, Department of Psychiatry, Rotterdam, the Netherlands
| | | |
Collapse
|
23
|
Lentine KL, Pastan S, Mohan S, Reese PP, Leichtman A, Delmonico FL, Danovitch GM, Larsen CP, Harshman L, Wiseman A, Kramer HJ, Vassalotti J, Joseph J, Longino K, Cooper M, Axelrod DA. A Roadmap for Innovation to Advance Transplant Access and Outcomes: A Position Statement From the National Kidney Foundation. Am J Kidney Dis 2021; 78:319-332. [PMID: 34330526 DOI: 10.1053/j.ajkd.2021.05.007] [Citation(s) in RCA: 18] [Impact Index Per Article: 4.5] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 04/17/2021] [Accepted: 05/01/2021] [Indexed: 02/07/2023]
Abstract
Over the past 65 years, kidney transplantation has evolved into the optimal treatment for patients with kidney failure, dramatically reducing suffering through improved survival and quality of life. However, access to transplant is still limited by organ supply, opportunities for transplant are inequitably distributed, and lifelong transplant survival remains elusive. To address these persistent needs, the National Kidney Foundation convened an expert panel to define an agenda for future research. The key priorities identified by the panel center on the needs to develop and evaluate strategies to expand living donation, improve waitlist management and transplant readiness, maximize use of available deceased donor organs, and extend allograft longevity. Strategies targeting the critical goal of decreasing organ discard that warrant research investment include educating patients and clinicians about potential benefits of accepting nonstandard organs, use of novel organ assessment technologies and real-time decision support, and approaches to preserve and resuscitate allografts before implantation. The development of personalized strategies to reduce the burden of lifelong immunosuppression and support "one transplant for life" was also identified as a vital priority. The panel noted the specific goal of improving transplant access and graft survival for children with kidney failure. This ambitious agenda will focus research investment to promote greater equity and efficiency in access to transplantation, and help sustain long-term benefits of the gift of life for more patients in need.
Collapse
Affiliation(s)
- Krista L Lentine
- Saint Louis University Center for Abdominal Transplantation, St Louis, MO.
| | - Stephen Pastan
- Department of Medicine, Emory Transplant Center, Atlanta, GA
| | - Sumit Mohan
- Department of Medicine, Columbia University Medical Center, New York, NY
| | - Peter P Reese
- Renal-Electrolyte and Hypertension Division, University of Pennsylvania, Philadelphia, PA
| | - Alan Leichtman
- Department of Medicine, University of Michigan, Ann Arbor, MI
| | | | | | | | - Lyndsay Harshman
- Department of Pediatrics, University of Iowa Transplant Institute, Iowa City, IA
| | - Alexander Wiseman
- Department of Medicine, Centura Health-Porter Adventist Hospital, Aurora, CO
| | | | - Joseph Vassalotti
- National Kidney Foundation, New York, NY; Department of Medicine, Icahn School of Medicine at Mount Sinai, New York, NY
| | | | | | - Matthew Cooper
- Department of Surgery, Medstar Georgetown Transplant Institute, Washington, DC
| | - David A Axelrod
- Department of Surgery, University of Iowa Transplant Institute, Iowa City, IA
| |
Collapse
|
24
|
Locke JE, Reed RD, Shewchuk RM, Stegner KL, Qu H. Cognitive mapping as an approach to facilitate organ donation among African Americans. Sci Prog 2021; 104:368504211029442. [PMID: 34261381 PMCID: PMC10450727 DOI: 10.1177/00368504211029442] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.3] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 01/23/2023]
Abstract
Making up 13.4% of the United States population, African Americans (AAs) account for 28.7% of candidates who are currently waiting for an organ donation. AAs are disproportionately affected by end-organ disease, particularly kidney disease, therefore, the need for transplantation among this population is high, and the high need is also observed for other solid organ transplantation. To this end, we worked with the AA community to derive an empirical framework of organ donation strategies that may facilitate AA decision-making. We used a cognitive mapping approach involving two distinct phases of primary data collection and a sequence of data analytic procedures to elicit and systematically organize strategies for facilitating organ donation. AA adults (n = 89) sorted 27 strategies identified from nominal group technique meetings in phase 1 based on their perceived similarities. Sorting data were aggregated and analyzed using Multidimensional scaling and hierarchical cluster analyses. Among 89 AA participants, 68.2% were female, 65.5% obtained > high school education, 69.5% reported annual household income ≤ $50,000. The average age was 47.4 years (SD = 14.5). Derived empirical framework consisted of five distinct clusters: fundamental knowledge, psychosocial support, community awareness, community engagement, and system accountability; and two dimensions: Approach, Donor-related Information. The derived empirical framework reflects an organization scheme that may facilitate AA decision-making about organ donation and suggests that targeted dissemination of donor-related information at both the individual-donor and community levels may be critical for increasing donation rates among AAs.
Collapse
Affiliation(s)
- Jayme E Locke
- Comprehensive Transplant Institute, University of Alabama at Birmingham (UAB), Birmingham, AL, USA
| | - Rhiannon D Reed
- Department of Surgery, Division of Transplantation, UAB, Birmingham, AL, USA
| | - Richard M Shewchuk
- School of Health Professions, Department of Health Services Administration, UAB, Birmingham, AL, USA
| | - Katherine L Stegner
- Department of Surgery, Division of Transplantation, UAB, Birmingham, AL, USA
| | - Haiyan Qu
- School of Health Professions, Department of Health Services Administration, UAB, Birmingham, AL, USA
| |
Collapse
|
25
|
Li AH, Lo M, Crawshaw JE, Dunnett AJ, Naylor KL, Garg AX, Presseau J. Interventions for increasing solid organ donor registration. Cochrane Database Syst Rev 2021; 4:CD10829. [PMID: 35608942 PMCID: PMC8164549 DOI: 10.1002/14651858.cd010829.pub2] [Citation(s) in RCA: 3] [Impact Index Per Article: 0.8] [Reference Citation Analysis] [Abstract] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 02/02/2023]
Abstract
BACKGROUND A solution for increasing the number of available organs for transplantation is to encourage more individuals to register a commitment for deceased organ donation. However, the percentage of the population registered for organ donation remains low in many countries. OBJECTIVES To evaluate the benefits and harms of various interventions used to increase deceased organ donor registration. SEARCH METHODS We searched the Cochrane Kidney and Transplant Register of Studies up to 11 August 2020 through contact with an Information Specialist using search terms relevant to this review. Studies in the Register are identified through searches of CENTRAL, MEDLINE, and EMBASE, conference proceedings, the International Clinical Trials Register Search Portal and ClinicalTrials.gov. SELECTION CRITERIA We included all randomised controlled trials (RCTs), cluster RCTs and quasi-RCTs of interventions to promote deceased organ donor registration. We included studies if they measured self-reported or verified donor registration, intention to donate, intention to register a decision or number of individuals signing donor cards as outcomes. DATA COLLECTION AND ANALYSIS Two authors independently assessed retrieved studies and extracted data from included studies. We assessed studies for risk of bias. We obtained summary estimates of effect using a random-effects model and expressed results as risk ratios (RR) (95% confidence intervals; CI) for dichotomous outcomes and mean difference (MD; 95% CI) or standardised mean difference (SMD; 95% CI) for continuous outcomes. In multi-arm trials, data were pooled to create single pair-wise comparisons. Analyses were stratified by specific intervention setting where available. MAIN RESULTS Our search strategy identified 46 studies (47 primary articles, including one abstract) comprising 24 parallel RCTs, 19 cluster RCTs and 3 quasi-RCTs. Sample sizes ranged from 138 to 1,085,292 (median = 514). A total of 16 studies measured registration behaviour, 27 measured intention to register/donate and three studies measured both registration behaviour and intention to register. Interventions were delivered in a variety of different settings: schools (14 studies), driver's motor vehicle (DMV) centres (5), mail-outs (4), primary care centres (3), workplaces (1), community settings (7) and general public (12). Interventions were highly varied in terms of their content and included strategies such as educational sessions and videos, leveraging peer leaders, staff training, message framing, and priming. Most studies were rated as having high or unclear risk of bias for random sequence generation and allocation concealment and low risk for the remainder of the domains. Data from 34/46 studies (74%) were available for meta-analysis. Low certainty evidence showed organ donation registration interventions had a small overall effect on improving registration behaviour (16 studies, 1,294,065 participants: RR 1.30, 95% CI 1.19 to 1.43, I2 = 84%), intention to register/donate (dichotomous) (10 studies, 10,838 participants: RR 1.21, 95% CI 1.03 to 1.42, I2 = 91%) and intention to register/donate (continuous) (9 studies, 3572 participants: SMD 0.23, 95% CI 0.11 to 0.36, I2 = 67%). Classroom-based interventions delivered in a lecture format by individuals from the transplant community may be effective at increasing intention to register/donate (3 studies, 675 participants: RR 1.33, 95% CI 1.15 to 1.55, I² = 0%). Community interventions targeting specific ethnic groups were generally effective at increasing registration rates (k = 5, n = 4186; RR 2.14, 95% CI 1.35 to 3.40, I² = 85%), although heterogeneity was high. In particular, interventions delivered in the community by trained peer-leaders appear to be effective (3 studies, 3819 participant: RR 2.09, 95% CI 1.08 to 4.06, I² = 87%), although again, the data lacked robustness. There was some evidence that framing messages (e.g. anticipated regret) and priming individuals (e.g. reciprocity) in a certain way may increase intention to register/donate, however, few studies measured this effect on actual registration. Overall, the studies varied significantly in terms of design, setting, content and delivery. Selection bias was evident and a quarter of the studies could not be included in the meta-analysis due to incomplete outcome data reporting. No adverse events were reported. AUTHORS' CONCLUSIONS In our review, we identified a variety of approaches used to increase organ donor registration including school-based educational sessions and videos, leveraging peer leaders in the community, DMV staff training, targeted messaging and priming. The variability in outcome measures used and incompleteness in reporting meant that most data could not be combined for analysis. When data were combined, overall effect sizes were small in favour of intervention groups over controls, however, there was significant variability in the data. There was some evidence that leveraging peer-leaders in the community to deliver organ donation education may improve registration rates and classroom-based education from credible individuals (i.e. members of the transplant community) may improve intention to register/donate, however, there is no clear evidence favouring any particular approach. There was mixed evidence for simple, low-intensity interventions utilising message framing and priming. However, it is likely that interest in these strategies will persist due to their reach and scalability. Further research is therefore required to adequately address the question of the most effective interventions for increasing deceased organ donor registration.
Collapse
Affiliation(s)
- Alvin H Li
- Department of Epidemiology and Biostatistics, Western University, London, Canada
| | - Marcus Lo
- London Health Sciences Centre, London, Canada
| | - Jacob E Crawshaw
- Clinical Epidemiology Program, Ottawa Hospital Research Institute, Ottawa, Canada
| | - Alexie J Dunnett
- Department of Medicine - Nephrology, London Health Sciences Centre, London, Canada
| | | | - Amit X Garg
- Department of Medicine, Epidemiology and Biostatistics, Western University, London, Canada
| | - Justin Presseau
- Clinical Epidemiology Program, Ottawa Hospital Research Institute, Ottawa, Canada
| |
Collapse
|
26
|
Weng FL, Davis LA, Ohman-Strickland PA, Waterman AD. Destination Transplant: Protocol for a Parallel-group Randomized Trial of an Educational Intervention to Increase Kidney Transplant Among Black People on the Transplant Waiting List. Transplant Direct 2021; 7:e683. [PMID: 33748412 PMCID: PMC7969245 DOI: 10.1097/txd.0000000000001136] [Citation(s) in RCA: 6] [Impact Index Per Article: 1.5] [Reference Citation Analysis] [Abstract] [Grants] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 11/02/2020] [Revised: 12/30/2020] [Accepted: 01/19/2021] [Indexed: 11/27/2022] Open
Abstract
For most patients with kidney failure, living donor kidney transplant (LDKT) is their best treatment option. Compared with White people, Black people are more likely to have kidney failure but less likely to receive LDKTs. In this study, the investigators will test an educational intervention, Destination Transplant, designed to reduce this disparity, among Black people already listed for kidney transplant. METHODS The investigators will conduct a parallel group, 2-arm randomized clinical trial among 500 Black kidney transplant candidates. The main objective of this study is to test an educational and behavioral intervention that is designed to increase receipt of LDKT among transplant candidates (persons active on the deceased donor kidney transplant waiting list) who are Black. Candidates on the kidney transplant waiting list will be randomly assigned to 1 of 2 conditions: (1) a control group that will receive Usual Care, or (2) an Intervention group that will receive Destination Transplant, a 9-month intervention that includes an in-person group-based education session, postcards at monthly intervals, and a follow-up phone call from a transplant educator. At baseline and during 18 months of follow-up, demographic and clinical variables will be collected, as well as variables such as transplant derailers (factors that might be sources of delay, difficulty, or challenge to pursuing transplant), transplant knowledge, and health literacy, small steps taken to pursue LDKT, readiness for LDKT, decisional balance and self-efficacy LDKT, decisional conflict, family support, availability of potential living donors, and general health status. CONCLUSIONS This educational intervention aims to increase both readiness to pursue LDKT and actual receipt of LDKTs among Black and African American patients who are already on the kidney transplant waiting list. The aim of the intervention is to reduce racial disparities in access to LDKT.
Collapse
Affiliation(s)
- Francis L. Weng
- Renal and Pancreas Transplant Division, Saint Barnabas Medical Center, Livingston, NJ
- Rutgers University School of Public Health, Piscataway, NJ
| | - LaShara A. Davis
- Renal and Pancreas Transplant Division, Saint Barnabas Medical Center, Livingston, NJ
- Division of Liberal Arts and Social Sciences, DeSales University, Center Valley, PA
| | | | - Amy D. Waterman
- Division of Nephrology, David Geffen School of Medicine, University of California, Los Angeles, Los Angeles, CA
- Terasaki Institute for Biomedical Innovation, Los Angeles, CA
| |
Collapse
|
27
|
Padela AI, Duivenbode R, Quinn M, Saunders MR. Informing American Muslims about living donation through tailored health education: A randomized controlled crossover trial evaluating increase in biomedical and religious knowledge. Am J Transplant 2021; 21:1227-1237. [PMID: 32772460 DOI: 10.1111/ajt.16242] [Citation(s) in RCA: 8] [Impact Index Per Article: 2.0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 05/06/2020] [Revised: 07/21/2020] [Accepted: 07/21/2020] [Indexed: 01/25/2023]
Abstract
Biomedical and religious knowledge affects organ donation attitudes among Muslims. We tested the effectiveness of mosque-based, religiously tailored, ethically balanced education on organ donation among Muslim Americans. Our randomized, controlled, crossover trial took place at 4 mosques randomized to an early arm where organ donation education preceded a control educational workshop or a late arm with the order reversed. Primary outcomes were changes in biomedical (Rotterdam Renal Replacement Knowledge Test living donation subscale, R3KT) and religious (Islamic Knowledge of Living Organ Donation, IK-LOD) living kidney donation knowledge. Statistical analysis employed a 2 (Treatment Arm) X 3 (Time of Assessment) mixed-method analysis of variance. Of 158 participants, 59 were in the early arm and 99 in the late arm. A between group t test comparison at Period 1 (Time 1 - Time 2), demonstrated that the early arm had a significantly higher mean IK-LOD (7.11 v 5.19, P < .05) and R3KT scores (7.65 v 4.90, P < .05) when compared to the late arm. Late arm participants also had significant increases in mean IK-LOD (5.19 v 7.16, P < .05) and R3KT scores (4.90 v. 6.81, P < .05) postintervention (Time 2-Time 3). Our novel program thus yielded significant kidney donation-related knowledge gains among Muslim Americans (NCT04443114 Clinicaltrials.gov).
Collapse
Affiliation(s)
- Aasim I Padela
- Initiative on Islam and Medicine, University of Chicago, Chicago, Illinois, USA.,MacLean Center for Clinical Medical Ethics, University of Chicago, Chicago, Illinois, USA.,Department of Medicine, University of Chicago Medical Center, Chicago, Illinois, USA
| | - Rosie Duivenbode
- Initiative on Islam and Medicine, University of Chicago, Chicago, Illinois, USA
| | - Michael Quinn
- Department of Medicine, University of Chicago Medical Center, Chicago, Illinois, USA
| | - Milda R Saunders
- MacLean Center for Clinical Medical Ethics, University of Chicago, Chicago, Illinois, USA.,Department of Medicine, University of Chicago Medical Center, Chicago, Illinois, USA
| |
Collapse
|
28
|
Waterman AD, Peipert JD, Cui Y, Beaumont JL, Paiva A, Lipsey AF, Anderson CS, Robbins ML. Your Path to Transplant: A randomized controlled trial of a tailored expert system intervention to increase knowledge, attitudes, and pursuit of kidney transplant. Am J Transplant 2021; 21:1186-1196. [PMID: 33245618 PMCID: PMC7882639 DOI: 10.1111/ajt.16262] [Citation(s) in RCA: 16] [Impact Index Per Article: 4.0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 10/13/2019] [Revised: 08/03/2020] [Accepted: 08/05/2020] [Indexed: 01/25/2023]
Abstract
Individually tailoring education over time may help more patients, especially racial/ethnic minorities, get waitlisted and pursue deceased and living donor kidney transplant (DDKT and LDKT, respectively). We enrolled 802 patients pursuing transplant evaluation at the University of California, Los Angeles Transplant Program into a randomized education trial. We compared the effectiveness of Your Path to Transplant (YPT), an individually tailored coaching and education program delivered at 4 time points, with standard of care (SOC) education on improving readiness to pursue DDKT and LDKT, transplant knowledge, taking 15 small transplant-related actions, and pursuing transplant (waitlisting or LDKT rates) over 8 months. Survey outcomes were collected prior to evaluation and at 4 and 8 months. Time to waitlisting or LDKT was assessed with at least 18 months of follow-up. At 8 months, compared to SOC, the YPT group demonstrated increased LDKT readiness (47% vs 33%, P = .003) and transplant knowledge (effect size [ES] = 0.41, P < .001). Transplant pursuit was higher in the YPT group (hazard ratio: 1.44, 95% confidence interval: 1.15-1.79, P = .002). A focused, coordinated education effort can improve transplant-seeking behaviors and waitlisting rates. ClinicalTrials.gov registration: NCT02181114.
Collapse
Affiliation(s)
- Amy D. Waterman
- Division of Nephrology, David Geffen School of Medicine, University of California Los Angeles, Los Angeles, California,Terasaki Institute of Biomedical Innovation, Los Angeles, California
| | - John D. Peipert
- Department of Medical Social Sciences, Feinberg School of Medicine, Northwestern University,Northwestern University Transplant Outcomes Research Collaborative, Comprehensive Transplant Center, Feinberg School of Medicine, Chicago, IL
| | - Yujie Cui
- Terasaki Institute of Biomedical Innovation, Los Angeles, California
| | | | - Andrea Paiva
- Department of Psychology, The University of Rhode Island, Kingston, RI
| | - Amanda F. Lipsey
- Division of Nephrology, David Geffen School of Medicine, University of California Los Angeles, Los Angeles, California,Terasaki Institute of Biomedical Innovation, Los Angeles, California
| | - Crystal S. Anderson
- Division of Nephrology, David Geffen School of Medicine, University of California Los Angeles, Los Angeles, California
| | - Mark L. Robbins
- Department of Psychology, The University of Rhode Island, Kingston, RI
| |
Collapse
|
29
|
Wesselman H, Ford CG, Leyva Y, Li X, Chang CCH, Dew MA, Kendall K, Croswell E, Pleis JR, Ng YH, Unruh ML, Shapiro R, Myaskovsky L. Social Determinants of Health and Race Disparities in Kidney Transplant. Clin J Am Soc Nephrol 2021; 16:262-274. [PMID: 33509963 PMCID: PMC7863655 DOI: 10.2215/cjn.04860420] [Citation(s) in RCA: 101] [Impact Index Per Article: 25.3] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 04/10/2020] [Accepted: 11/16/2020] [Indexed: 02/04/2023]
Abstract
BACKGROUND AND OBJECTIVES Black patients have a higher incidence of kidney failure but lower rate of deceased- and living-donor kidney transplantation compared with White patients, even after taking differences in comorbidities into account. We assessed whether social determinants of health (e.g., demographics, cultural, psychosocial, knowledge factors) could account for race differences in receiving deceased- and living-donor kidney transplantation. DESIGN, SETTING, PARTICIPANTS, & MEASUREMENTS Via medical record review, we prospectively followed 1056 patients referred for kidney transplant (2010-2012), who completed an interview soon after kidney transplant evaluation, until their kidney transplant. We used multivariable competing risk models to estimate the cumulative incidence of receipt of any kidney transplant, deceased-donor transplant, or living-donor transplant, and the factors associated with each outcome. RESULTS Even after accounting for social determinants of health, Black patients had a lower likelihood of kidney transplant (subdistribution hazard ratio, 0.74; 95% confidence interval, 0.55 to 0.99) and living-donor transplant (subdistribution hazard ratio, 0.49; 95% confidence interval, 0.26 to 0.95), but not deceased-donor transplant (subdistribution hazard ratio, 0.92; 95% confidence interval, 0.67 to 1.26). Black race, older age, lower income, public insurance, more comorbidities, being transplanted before changes to the Kidney Allocation System, greater religiosity, less social support, less transplant knowledge, and fewer learning activities were each associated with a lower probability of any kidney transplant. Older age, more comorbidities, being transplanted before changes to the Kidney Allocation System, greater religiosity, less social support, and fewer learning activities were each associated with a lower probability of deceased-donor transplant. Black race, older age, lower income, public insurance, higher body mass index, dialysis before kidney transplant, not presenting with a potential living donor, religious objection to living-donor transplant, and less transplant knowledge were each associated with a lower probability of living-donor transplant. CONCLUSIONS Race and social determinants of health are associated with the likelihood of undergoing kidney transplant.
Collapse
Affiliation(s)
- Hannah Wesselman
- Department of Biological Sciences, University of Notre Dame, Notre Dame, Indiana
| | - Christopher Graham Ford
- Center for Healthcare Equity in Kidney Disease, University of New Mexico Health Sciences Center, Albuquerque, New Mexico
| | - Yuridia Leyva
- Center for Healthcare Equity in Kidney Disease, University of New Mexico Health Sciences Center, Albuquerque, New Mexico
| | - Xingyuan Li
- Eli Lilly and Company, Indianapolis, Indiana
| | - Chung-Chou H. Chang
- Department of Medicine, University of Pittsburgh, School of Medicine, Pittsburgh, Pennsylvania,Department of Biostatistics, University of Pittsburgh, Graduate School of Public Health, Pittsburgh, Pennsylvania
| | - Mary Amanda Dew
- Department of Psychiatry, University of Pittsburgh, School of Medicine, Pittsburgh, Pennsylvania
| | - Kellee Kendall
- Department of Medicine, University of Pittsburgh, School of Medicine, Pittsburgh, Pennsylvania
| | - Emilee Croswell
- Department of Medicine, University of Pittsburgh, School of Medicine, Pittsburgh, Pennsylvania
| | - John R. Pleis
- Division of Research and Methodology, National Center for Health Statistics, Centers for Disease Control and Prevention, Hyattsville, Maryland
| | - Yue Harn Ng
- Department of Internal Medicine, University of New Mexico, School of Medicine, Albuquerque, New Mexico
| | - Mark L. Unruh
- Department of Internal Medicine, University of New Mexico, School of Medicine, Albuquerque, New Mexico
| | - Ron Shapiro
- Mount Sinai Recanati/Miller Transplantation Institute, Icahn School of Medicine, New York, New York
| | - Larissa Myaskovsky
- Center for Healthcare Equity in Kidney Disease, University of New Mexico Health Sciences Center, Albuquerque, New Mexico,Department of Internal Medicine, University of New Mexico, School of Medicine, Albuquerque, New Mexico
| |
Collapse
|
30
|
Peipert JD, Lad T, Khosla PG, Garcia SF, Hahn EA. A Low Literacy, Multimedia Health Information Technology Intervention to Enhance Patient-Centered Cancer Care in Safety Net Settings Increased Cancer Knowledge in a Randomized Controlled Trial. Cancer Control 2021; 28:10732748211036783. [PMID: 34565193 PMCID: PMC8481731 DOI: 10.1177/10732748211036783] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/17/2022] Open
Abstract
We tested whether a low-literacy-friendly, multimedia information and assessment system used in daily clinical practice enhanced patient-centered care and improved patient outcomes. This was a prospective, parallel-group, randomized controlled trial with 2 arms, CancerHelp-Talking Touchscreen (CancerHelp-TT) versus control, among adults with Stage I-III breast or colorectal cancer receiving chemotherapy and/or radiation therapy in safety net settings. Each patient was assessed for outcomes at 4 timepoints: after starting treatment (baseline), during treatment, immediately after treatment, and at follow-up assessment. The primary outcomes were health beliefs, cancer knowledge, self-efficacy, and satisfaction with communication about cancer and its treatments. Health-related quality of life (HRQOL) was a secondary outcome. A total of 129 patients participated in the study (65 intervention and 64 control), and approximately 50% of these completed the study. Patients randomized to receive the CancerHelp-TT program had a significantly larger increase in their cancer knowledge in comparison to those randomized to the control arm (effect size = .48, P = .05). While effect sizes for differences between randomized groups in self-efficacy, health beliefs, HRQOL, and satisfaction with communication were small (.10-.48), there was a consistent trend that participants in the intervention group showed larger increases over time in all outcomes compared to the control group. The CancerHelp-TT software was favorably rated by intervention participants. The CancerHelp-TT program showed promise to increase vulnerable cancer patients' cancer knowledge and adaptive health beliefs and attitudes. However, vulnerable patients may need additional interventional support in settings outside cancer clinics.
Collapse
Affiliation(s)
- John D. Peipert
- Department of Medical Social Sciences, Northwestern University Feinberg School of Medicine, Chicago, IL, USA
| | - Thomas Lad
- John H. Stroger, Jr. Hospital, Chicago, IL, USA
| | | | - Sofia F. Garcia
- Department of Medical Social Sciences and Center for Patient-Centered Outcomes, Northwestern University Feinberg School of Medicine, Chicago, IL, USA
| | - Elizabeth A. Hahn
- Department of Medical Social Sciences and Center for Patient-Centered Outcomes, Northwestern University Feinberg School of Medicine, Chicago, IL, USA
| |
Collapse
|
31
|
Abstract
Kidney transplantation is the ideal treatment option for patients with end-stage kidney disease (ESKD). Since there is clear mortality benefit to receiving a transplant regardless of comorbidities and age, the gold standard of care should focus on attaining kidney transplantation and minimizing, or better yet eliminating, time on dialysis. Unfortunately, only a small percentage of patients with ESKD receive a kidney transplant. Several barriers to kidney transplantation have been identified. Barriers can largely be grouped into three categories: patient-related, physician/provider-related, and system-related. Several barriers fall into multiple categories and play a role at various levels within the healthcare system. Acknowledging and understanding these barriers will allow transplant centers and dialysis facilities to make the necessary interventions to mitigate these disparities, optimize the transplant evaluation process, and improve patient outcomes. This review will discuss these barriers and potential interventions to increase access to kidney transplantation.
Collapse
|
32
|
King A, Lopez FY, Lissanu L, Robinson E, Almazan E, Metoyer G, Tanumihardjo J, Quinn M, Peek M, Saunders M. Renal Replacement Knowledge and Preferences for African Americans With Chronic Kidney Disease. J Ren Care 2020; 46:151-160. [PMID: 31919998 PMCID: PMC7343610 DOI: 10.1111/jorc.12312] [Citation(s) in RCA: 6] [Impact Index Per Article: 1.2] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 12/18/2022]
Abstract
BACKGROUND Renal replacement therapies (RRT) other than in-centre haemodialyses are underutilised by African Americans with end-stage renal disease (ESRD) even though they are associated with reduced costs, morbidity and mortality as well as improved quality of life for patients. OBJECTIVES To understand African American patients' knowledge of RRT options and how patient, provider and system-factors contribute to knowledge and preferences. Participants' interviews were conducted at the University of Chicago Medical Center with African American patients with chronic kidney disease (CKD). The final analysis included 28 interviews; 22 patients had CKD not yet on dialysis or having received a transplant, while 6 had reached ESRD and were receiving treatment for kidney failure. Approach Transcripts were uploaded into NVivo8 for coding. Thematic analysis was used for data interpretation. RESULTS Four themes were identified: (1) limited knowledge of home modalities and deceased donor options, (2) CKD patients gave little thought to choosing RRT options, (3) CKD patients relied on doctors for treatment decisions, and (4) while patients reported knowledge of living kidney donation transplants (LKDT), it did not translate to receiving an LKDT. CONCLUSION African Americans face significant knowledge and access barriers when deciding on their RRT treatment. Even patients with advanced CKD were still in the early stages of RRT selection. Understanding the knowledge gaps and barriers patients face will inform our subsequent intervention to educate and motivate patients to increase CKD self-care and improve communication between patients, their families and their providers about different RRT treatments.
Collapse
Affiliation(s)
- Akilah King
- Department of Nephrology, University of Chicago Medical Center, Chicago, Illinois, USA
| | - Fanny Y. Lopez
- Department of General Internal Medicine, University of Chicago Medical Center, Chicago, Illinois, USA
| | - Lydia Lissanu
- Department of General Internal Medicine, University of Chicago Medical Center, Chicago, Illinois, USA
| | - Eric Robinson
- Department of Hospital Medicine, University of Chicago Medical Center, Chicago, Illinois, USA
| | - Erik Almazan
- Department of General Internal Medicine, University of Chicago Medical Center, Chicago, Illinois, USA
| | - Gabrielle Metoyer
- Department of General Internal Medicine, University of Chicago Medical Center, Chicago, Illinois, USA
| | - Jacob Tanumihardjo
- Department of General Internal Medicine, University of Chicago Medical Center, Chicago, Illinois, USA
| | - Michael Quinn
- Department of General Internal Medicine, University of Chicago Medical Center, Chicago, Illinois, USA
| | - Monica Peek
- Department of General Internal Medicine, University of Chicago Medical Center, Chicago, Illinois, USA
| | - Milda Saunders
- Department of General Internal Medicine, University of Chicago Medical Center, Chicago, Illinois, USA
| |
Collapse
|
33
|
Addressing Racial Disparities in Live Donor Kidney Transplantation Through Education and Advocacy Training. Transplant Direct 2020; 6:e593. [PMID: 32851126 PMCID: PMC7423916 DOI: 10.1097/txd.0000000000001041] [Citation(s) in RCA: 9] [Impact Index Per Article: 1.8] [Reference Citation Analysis] [Abstract] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 03/27/2020] [Revised: 06/16/2020] [Accepted: 06/18/2020] [Indexed: 11/27/2022] Open
Abstract
Background. The Live Donor Champion (LDC) program trains kidney transplant (KT) candidates and their family/friends (“champions”) as educator-advocates for live donor KT (LDKT). This program was created to empower patients and champions, particularly African American (AA) waitlist candidates that historically had lower access to LDKT. We assessed changes in knowledge about and comfort discussing live donation and donor referral associated with LDC participation, both overall and by participant race. Methods. We compared 163 adult KT candidates who were LDC participants from October 2013 to May 2016 with 489 matched controls, both overall and by race. We compared changes in comfort and knowledge post-LDC using rank-sum tests among participants by race. We compared time to first live donor referral for participants versus controls, by race, using Cox regression. Results. Post-LDC versus pre-LDC, participants had higher median knowledge (83% versus 63% on 12-question quiz; P < 0.001) and comfort (1.8 versus 1 on 4-point Likert scale; P < 0.001). Among participants, AAs had similar baseline and final knowledge (P = 0.9 and P = 0.1, respectively) and baseline comfort (P > 0.9) as non-AAs but higher final comfort (2 versus 1.4; P = 0.005) than non-AAs. LDC participants were 5.8 times as likely as controls to have a live donor referral (aHR 3.765.788.89; P < 0.001); the impact of LDC participation was similar among non-AAs and AAs (p-interaction = 0.6). Conclusions. The LDC program increased knowledge, comfort, and live donor referral for non-AA and AA participants, underscoring the effectiveness in the program in promoting LDKT in a population with historically lower access to LDKT.
Collapse
|
34
|
Unexpected Race and Ethnicity Differences in the US National Veterans Affairs Kidney Transplant Program. Transplantation 2020; 103:2701-2714. [PMID: 31397801 DOI: 10.1097/tp.0000000000002905] [Citation(s) in RCA: 11] [Impact Index Per Article: 2.2] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 12/15/2022]
Abstract
BACKGROUND Racial/ethnic minorities have lower rates of deceased kidney transplantation (DDKT) and living donor kidney transplantation (LDKT) in the United States. We examined whether social determinants of health (eg, demographics, cultural, psychosocial, knowledge factors) could account for differences in the Veterans Affairs (VA) Kidney Transplantation (KT) Program. METHODS We conducted a multicenter longitudinal cohort study of 611 Veterans undergoing evaluation for KT at all National VA KT Centers (2010-2012) using an interview after KT evaluation and tracking participants via medical records through 2017. RESULTS Hispanics were more likely to get any KT (subdistribution hazard ratios [SHR] [95% confidence interval (CI)]: 1.8 [1.2-2.8]) or DDKT (SHR [95% CI]: 2.0 [1.3-3.2]) than non-Hispanic white in univariable analysis. Social determinants of health, including marital status (SHR [95% CI]: 0.6 [0.4-0.9]), religious objection to LDKT (SHR [95% CI]: 0.6 [0.4-1.0]), and donor preference (SHR [95% CI]: 2.5 [1.2-5.1]), accounted for some racial differences, and changes to Kidney Allocation System policy (SHR [95% CI]: 0.3 [0.2-0.5]) mitigated race differences in DDKT in multivariable analysis. For LDKT, non-Hispanic African American Veterans were less likely to receive an LDKT than non-Hispanic white (SHR [95% CI]: 0.2 [0.0-0.7]), but accounting for age (SHR [95% CI]: 1.0 [0.9-1.0]), insurance (SHR [95% CI]: 5.9 [1.1-33.7]), presenting with a living donor (SHR [95% CI]: 4.1 [1.4-12.3]), dialysis duration (SHR [95% CI]: 0.3 [0.2-0.6]), network of potential donors (SHR [95% CI]: 1.0 [1.0-1.1]), self-esteem (SHR [95% CI]: 0.4 [0.2-0.8]), transplant knowledge (SHR [95% CI]: 1.3 [1.0-1.7]), and changes to Kidney Allocation System policy (SHR [95% CI]: 10.3 [2.5-42.1]) in multivariable analysis eliminated those disparities. CONCLUSIONS The VA KT Program does not exhibit the same pattern of disparities in KT receipt as non-VA centers. Transplant centers can use identified risk factors to target patients who may need more support to ensure they receive a transplant.
Collapse
|
35
|
Efficacy of Educational Interventions in Improving Measures of Living-donor Kidney Transplantation Activity: A Systematic Review and Meta-analysis. Transplantation 2020; 103:2566-2575. [PMID: 30946222 DOI: 10.1097/tp.0000000000002715] [Citation(s) in RCA: 6] [Impact Index Per Article: 1.2] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 12/24/2022]
Abstract
BACKGROUND To address patient-level barriers to living-donor kidney transplantation (LDKT), centers have implemented educational interventions. Recently, some have highlighted several gaps in knowledge and lack of evidence of efficacy of these interventions. No review has synthesized the available data. METHODS We conducted a systematic review and meta-analysis of studies conducted to increase measures of LDKT. Outcomes of interest were LDKT rates, donor evaluation, donor contact/inquiry, total transplantation rates, and change in knowledge scores and pursuit behaviors. A literature search was conducted across 7 databases from inception until 2017. Educational interventions were a decision/teaching aid alone or with personalized sessions. Comparator was another intervention or nonspecific education. Random effects meta-analysis was performed to pool risk ratios (RRs) across studies. RESULTS Of the 1813 references, 15 met the inclusion criteria; 9 were randomized control trials. When compared with nonspecific education, interventions increased LDKT rates (RR = 2.54; 95% confidence interval [CI], 1.49-4.35), donor evaluation (RR = 3.82; 95% CI, 1.91-7.64), and donor inquiry/contact (RR = 2.41; 95% CI, 1.53-3.80), but not total transplants (RR = 1.24; 95% CI, 0.96-1.61). Significant increased mean knowledge scores postintervention was noted, and most showed favorable trends in pursuit behaviors. Quality across the studies was mixed and sometimes difficult to assess. The biggest limitations were small sample size, selection bias, and short follow-ups. CONCLUSIONS Educational interventions improve measures of LDKT activity; however, current literature is heterogeneous and at risk of selection bias. Prospective studies with diverse patient populations, longer follow-ups, and robust outcomes are needed to inform clinical practice.
Collapse
|
36
|
Burnapp L, Van Assche K, Lennerling A, Slaats D, Van Dellen D, Mamode N, Citterio F, Zuidema W, Weimar W, Dor FJMF. Raising awareness of unspecified living kidney donation: an ELPAT view. Clin Kidney J 2020; 13:159-165. [PMID: 32296519 PMCID: PMC7147300 DOI: 10.1093/ckj/sfz067] [Citation(s) in RCA: 16] [Impact Index Per Article: 3.2] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Journal Information] [Subscribe] [Scholar Register] [Received: 11/18/2018] [Accepted: 04/08/2019] [Indexed: 12/11/2022] Open
Abstract
BACKGROUND Living donor kidney transplantation (LDKT) is the preferred treatment for patients with end-stage renal disease and unspecified living kidney donation is morally justified. Despite the excellent outcomes of LDKT, unspecified kidney donation (UKD) is limited to a minority of European countries due to legal constraints and moral objections. Consequently, there are significant variations in practice and approach between countries and the contribution of UKD is undervalued. Where UKD is accepted as routine, an increasing number of patients in the kidney exchange programme are successfully transplanted when a 'chain' of transplants is triggered by a single unspecified donor. By expanding the shared living donor pool, the benefit of LDKT is extended to patients who do not have their own living donor because a recipient on the national transplant list always completes the chain. Is there a moral imperative to increase the scope of UKD and how could this be achieved? METHODS An examination of the literature and individual country practices was performed to identify the limitations on UKD in Europe and recommend strategies to increase transplant opportunities. RESULTS Primary limitations to UKD, key players and their roles and responsibilities were identified. CONCLUSIONS Raising awareness to encourage the public to volunteer to donate is appropriate and desirable to increase UKD. Recommendations are made to provide a framework for increasing awareness and engagement in UKD. The public, healthcare professionals, policy makers and society and religious leaders have a role to play in creating an environment for change.
Collapse
Affiliation(s)
- Lisa Burnapp
- Department of Transplantation and Nephrology, Guy’s & St Thomas’ NHS Foundation Trust, London, UK
| | | | - Annette Lennerling
- Department of Transplantation, Sahlgrenska University Hospital, Gothenburg, Sweden
| | - Dorthe Slaats
- Department Internal Medicine, Erasmus MC, Rotterdam, The Netherlands
| | - David Van Dellen
- Department of Surgery, Manchester Royal Infirmary, Manchester, UK
| | - Nizam Mamode
- Department of Transplantation and Nephrology, Guy’s & St Thomas’ NHS Foundation Trust, London, UK
| | - Franco Citterio
- Renal Transplantation Unit, Catholic University, Rome, Italy
| | - Willij Zuidema
- Department Internal Medicine, Erasmus MC, Rotterdam, The Netherlands
| | - Willem Weimar
- Department Internal Medicine, Erasmus MC, Rotterdam, The Netherlands
| | - Frank J M F Dor
- Imperial College Renal and Transplant Centre, Hammersmith Hospital, Imperial College, London, UK
| |
Collapse
|
37
|
Cabacungan AN, Ellis MJ, Sudan D, Strigo TS, Pounds I, Riley JA, Falkovic M, Alkon AN, Peskoe SB, Davenport CA, Pendergast JF, Ephraim PL, Mohottige D, Diamantidis CJ, St Clair Russell J, DePasquale N, Boulware LE. Associations of perceived information adequacy and knowledge with pursuit of live donor kidney transplants and living donor inquiries among African American transplant candidates. Clin Transplant 2020; 34:e13799. [PMID: 31999012 PMCID: PMC7135970 DOI: 10.1111/ctr.13799] [Citation(s) in RCA: 8] [Impact Index Per Article: 1.6] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Journal Information] [Subscribe] [Scholar Register] [Received: 08/23/2019] [Revised: 01/16/2020] [Accepted: 01/24/2020] [Indexed: 11/30/2022]
Abstract
We studied associations between perceived adequacy of live donor kidney transplant (LDKT) information or knowledge with pursuit of LDKT or receipt of live donor inquiries among 300 African American kidney transplant candidates. Participants reported via questionnaire how informed or knowledgeable they felt regarding LDKT. Participants also reported their pursuit of LDKT, categorized as "low" (no discussion with family or friends about LDKT and no identified donor), "intermediate" (discussed LDKT with family but no identified donor) or "high" (discussed LDKT with family and identified a potential donor). We reviewed participants' electronic health records to identify potential donors' transplant center inquiries on participants' behalves. A minority of participants reported they felt "very" or "extremely" well informed about LDKT (39%) or had "a great deal" of LDKT knowledge (38%). Participants perceiving themselves as "very" or "extremely" (vs "not" or "slightly") well informed about LDKT had statistically significantly greater odds of intermediate or high (vs low) pursuit of LDKT (odds ratio [95% confidence interval] 2.71 [1.02-7.17]). Perceived LDKT knowledge was not associated with pursuit of LDKT. Neither perceived information adequacy nor knowledge was associated with living donor inquiries. Efforts to better understand the role of education in the pursuit of LDKT among African American transplant candidates are needed.
Collapse
Affiliation(s)
- Ashley N Cabacungan
- Division of General Internal Medicine, Department of Medicine, Duke University School of Medicine, Durham, North Carolina
| | - Matthew J Ellis
- Division of Nephrology, Department of Medicine, Duke University School of Medicine, Durham, North Carolina
| | - Debra Sudan
- Department of Surgery, Duke University Medical Center, Durham, North Carolina
| | - Tara S Strigo
- Division of General Internal Medicine, Department of Medicine, Duke University School of Medicine, Durham, North Carolina
| | - Iris Pounds
- Division of General Internal Medicine, Department of Medicine, Duke University School of Medicine, Durham, North Carolina
| | - Jennie A Riley
- Division of General Internal Medicine, Department of Medicine, Duke University School of Medicine, Durham, North Carolina
| | - Margaret Falkovic
- Division of General Internal Medicine, Department of Medicine, Duke University School of Medicine, Durham, North Carolina
| | - Aviel N Alkon
- Division of General Internal Medicine, Department of Medicine, Duke University School of Medicine, Durham, North Carolina
| | - Sarah B Peskoe
- Department of Biostatistics and Bioinformatics, Duke University School of Medicine, Durham, North Carolina
| | - Clemontina A Davenport
- Department of Biostatistics and Bioinformatics, Duke University School of Medicine, Durham, North Carolina
| | - Jane F Pendergast
- Department of Biostatistics and Bioinformatics, Duke University School of Medicine, Durham, North Carolina
| | - Patti L Ephraim
- Welch Center for Prevention, Epidemiology and Clinical Research, Baltimore, Maryland.,Department of Epidemiology, Johns Hopkins Bloomberg School of Public Health, Baltimore, Maryland
| | - Dinushika Mohottige
- Division of Nephrology, Department of Medicine, Duke University School of Medicine, Durham, North Carolina
| | - Clarissa J Diamantidis
- Division of General Internal Medicine, Department of Medicine, Duke University School of Medicine, Durham, North Carolina.,Division of Nephrology, Department of Medicine, Duke University School of Medicine, Durham, North Carolina
| | - Jennifer St Clair Russell
- Division of General Internal Medicine, Department of Medicine, Duke University School of Medicine, Durham, North Carolina
| | - Nicole DePasquale
- Division of General Internal Medicine, Department of Medicine, Duke University School of Medicine, Durham, North Carolina
| | - L Ebony Boulware
- Division of General Internal Medicine, Department of Medicine, Duke University School of Medicine, Durham, North Carolina
| |
Collapse
|
38
|
Walker RC, Abel S, Reynolds A, Palmer SC, Walker C, Tipene-Leach DC. Experiences, perspectives and values of Indigenous peoples regarding kidney transplantation: systematic review and thematic synthesis of qualitative studies. Int J Equity Health 2019; 18:204. [PMID: 31888651 PMCID: PMC6937677 DOI: 10.1186/s12939-019-1115-y] [Citation(s) in RCA: 19] [Impact Index Per Article: 3.2] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 09/07/2019] [Accepted: 12/19/2019] [Indexed: 11/10/2022] Open
Abstract
Background Kidney transplantation is considered best practice treatment for end stage kidney disease (ESKD), however Indigenous patients are substantially less likely to receive either a deceased or live donor kidney transplant than non-Indigenous patients. We describe Indigenous peoples’ experiences and perspectives including traditional values around kidney transplantation to inform international transplant programs. Methods We conducted a systematic review of qualitative studies involving Indigenous adults who have experience with or perceptions of kidney transplantation. We searched MEDLINE, Embase, PsychINFO, and CINAHL, in conjunction with analysis of Google Scholar and reference lists of related studies till July 2019. We utilised thematic synthesis to analyse data. Completeness of reporting in studies was evaluated using the Consolidated Criteria for Reporting Qualitative Studies (COREQ) framework. Results Eight studies involving 225 Indigenous participants were included. Five themes were identified: strong desire for transplantation (seeking normality and freedom from dialysis, wanting to reduce burden of disease within community); lack of partnership in shared decision-making (receiving inadequate information, ineffective communication); barriers to live kidney donation (difficulty asking, apprehension about impact on donor, avoiding additional financial burden and fear of complications); cultural considerations (influence of traditional values and beliefs, reconciling traditional values with pragmatic need); and experiencing lack of cultural competence in clinical care (struggling with prejudice and ignorance, mistrust of clinicians and health system). Conclusion Indigenous participants had a strong desire for a kidney transplant and recognised the need for more readily available kidney transplants for others in their communities with ESKD. However, they faced prejudice and a lack of cultural competence by health workers as well as wider barriers to transplantation in systems that did not support effective and culturally appropriate delivery of information and care. Traditional cultural values also influenced decisions regarding kidney transplantation but such values were moderated when considering transplantation. Transplantation programs need to identify and mitigate barriers, such as the financial burden, promote cultural safety and incorporate traditional values into the promotion of transplantation in order to address inequitable transplantation rates. Registration Not applicable.
Collapse
Affiliation(s)
- Rachael C Walker
- School of Nursing, Eastern Institute of Technology, 501 Gloucester Street, Taradale, Napier, Hawke's Bay, 4112, New Zealand.
| | - Sally Abel
- Kaupapa Consulting Ltd, Napier, 4110, New Zealand
| | - Annie Reynolds
- Department of Medicine, Hawke's Bay District Health Board, Hastings, 4130, New Zealand
| | - Suetonia C Palmer
- Department of Medicine, University of Otago, Christchurch, 8140, New Zealand
| | - Curtis Walker
- Department of Medicine, Midcentral District Health Board, Palmerston North, 4442, New Zealand
| | - David C Tipene-Leach
- Research and Innovation Centre, Eastern Institute of Technology, Napier, 4112, New Zealand
| |
Collapse
|
39
|
Abstract
BACKGROUND Kidney transplant is the best treatment for most end-stage renal disease (ESRD) patients, but proportionally few ESRD patients receive kidney transplant. To make an informed choice about whether to pursue kidney transplant, patients must be knowledgeable of its risks and benefits. To reliably and validly measure ESRD patients' kidney transplant knowledge, rigorously tested measures are required. This article describes the development and psychometric testing of the Knowledge Assessment of Renal Transplantation (KART). METHODS We administered 17 transplant knowledge items to a sample of 1294 ESRD patients. Item characteristics and scale scores were estimated using an Item Response Theory graded response model. Construct validity was tested by examining differences in scale scores between patients who had spent less than 1 and 1 hour or longer receiving various types of transplant education. RESULTS Item Response Theory modeling suggested that 15 items should be retained for the KART. This scale had a marginal reliability of 0.75 and evidenced acceptable reliability (>0.70) across most of its range. Construct validity was supported by the KART's ability to distinguish patients who had spent less than 1 and 1 hour or longer receiving different types of kidney transplant education, including talking to doctors/medical staff (effect size [ES], 0.61; P < 0.001), reading brochures (ES, 0.45; P < 0.001), browsing the internet (ES, 0.56; P < 0.001), and watching videos (ES, 0.56; P < 0.001). CONCLUSIONS The final 15-item KART can be used to determine the kidney transplant knowledge levels of ESRD patients and plan appropriate interventions to ensure informed transplant decision making occurs.
Collapse
|
40
|
Handtke O, Schilgen B, Mösko M. Culturally competent healthcare - A scoping review of strategies implemented in healthcare organizations and a model of culturally competent healthcare provision. PLoS One 2019; 14:e0219971. [PMID: 31361783 PMCID: PMC6667133 DOI: 10.1371/journal.pone.0219971] [Citation(s) in RCA: 116] [Impact Index Per Article: 19.3] [Reference Citation Analysis] [Abstract] [MESH Headings] [Grants] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 01/09/2019] [Accepted: 07/06/2019] [Indexed: 01/18/2023] Open
Abstract
BACKGROUND Culturally and linguistically diverse patients access healthcare services less than the host populations and are confronted with different barriers such as language barriers, legal restrictions or differences in health beliefs. In order to reduce these disparities, the promotion of cultural competence in healthcare organizations has been a political goal. This scoping review aims to collect components and strategies from evaluated interventions that provide culturally competent healthcare for culturally and linguistically diverse patients within healthcare organizations and to examine their effects on selected outcome measures. Thereafter, we aim to organize identified components into a model of culturally competent healthcare provisions. METHODS AND FINDINGS A systematic literature search was carried out using three databases (Pubmed, PsycINFO and Web of Science) to identify studies which have implemented and evaluated cultural competence interventions in healthcare facilities. PICO criteria were adapted to formulate the research question and to systematically choose relevant search terms. Sixty-seven studies implementing culturally competent healthcare interventions were included in the final synthesis. Identified strategies and components of culturally competent healthcare extracted from these studies were clustered into twenty categories, which were organized in four groups: Components of culturally competent healthcare-Individual level; Components of culturally competent healthcare-Organizational level; Strategies to implement culturally competent healthcare and Strategies to provide access to culturally competent healthcare. A model integrating the results is proposed. The overall effects on patient outcomes and utilization rates of identified components or strategies were positive but often small or not significant. Qualitative data suggest that components and strategies of culturally competent healthcare were appreciated by patients and providers. CONCLUSION This scoping review used a bottom-up approach to identify components and strategies of culturally competent healthcare interventions and synthesized the results in a model of culturally competent healthcare provision. Reported effects of single components or strategies are limited because most studies implemented a combination of different components and strategies simultaneously.
Collapse
Affiliation(s)
- Oriana Handtke
- Department of Medical Psychology, University Medical Center Hamburg-Eppendorf, Hamburg, Germany
| | - Benjamin Schilgen
- Department of Medical Psychology, University Medical Center Hamburg-Eppendorf, Hamburg, Germany
| | - Mike Mösko
- Department of Medical Psychology, University Medical Center Hamburg-Eppendorf, Hamburg, Germany
| |
Collapse
|
41
|
Cabacungan A, Diamantidis C, St. Clair Russell J, Strigo T, Pounds I, Alkon A, Riley J, Falkovic M, Pendergast J, Davenport C, Ellis M, Sudan D, Hill-Briggs F, Browne T, Ephraim P, Boulware L. Development of a Telehealth Intervention to Improve Access to Live Donor Kidney Transplantation. Transplant Proc 2019; 51:665-675. [DOI: 10.1016/j.transproceed.2018.12.032] [Citation(s) in RCA: 9] [Impact Index Per Article: 1.5] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 10/12/2018] [Accepted: 12/05/2018] [Indexed: 01/07/2023]
|
42
|
Abstract
The best treatment option for many patients with kidney failure is a kidney transplant from a living donor. Countries that successfully increase their rate of living kidney donation will decrease their reliance on dialysis, the most expensive and high-risk form of kidney replacement therapy. Outlined here are some barriers that prevent some patients from pursuing living kidney donation and current knowledge on some potential solutions to these barriers. Also described are strategies to promote living kidney donation in a defensible system of practice. Safely increasing the rate of living kidney donation will require better programs and policies to improve the experiences of living donors and their recipients, to safeguard the practice for years to come.
Collapse
Affiliation(s)
- Amit X Garg
- Department of Medicine, Epidemiology and Biostatistics, Western University, London, Ontario, Canada
| |
Collapse
|
43
|
Sullivan CM, Barnswell KV, Greenway K, Kamps CM, Wilson D, Albert JM, Dolata J, Huml A, Pencak JA, Ducker JT, Gedaly R, Jones CM, Pesavento T, Sehgal AR. Impact of Navigators on First Visit to a Transplant Center, Waitlisting, and Kidney Transplantation: A Randomized, Controlled Trial. Clin J Am Soc Nephrol 2018; 13:1550-1555. [PMID: 30135171 PMCID: PMC6218827 DOI: 10.2215/cjn.03100318] [Citation(s) in RCA: 11] [Impact Index Per Article: 1.6] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 03/08/2018] [Accepted: 06/22/2018] [Indexed: 01/15/2023]
Abstract
BACKGROUND AND OBJECTIVES Many patients with ESKD face barriers in completing the steps required to obtain a transplant. These eight sequential steps are medical suitability, interest in transplant, referral to a transplant center, first visit to center, transplant workup, successful candidate, waiting list or identify living donor, and receive transplant. This study sought to determine the effect of navigators on helping patients complete these steps. DESIGN, SETTING, PARTICIPANTS, & MEASUREMENTS Our study was a cluster randomized, controlled trial involving 40 hemodialysis facilities and four transplant centers in Ohio, Kentucky, and Indiana from January 1, 2014 to December 31, 2016. Four trained kidney transplant recipients met regularly with patients on hemodialysis at 20 intervention facilities, determined their step in the transplant process, and provided tailored information and assistance in completing that step and subsequent steps. Patients at 20 control facilities continued to receive usual care. Primary study outcomes were waiting list placement and receipt of a deceased or living donor transplant. An exploratory outcome was first visit to a transplant center. RESULTS Before the trial, intervention (1041 patients) and control (836 patients) groups were similar in the proportions of patients who made a first visit to a transplant center, were placed on a waiting list, and received a deceased or living donor transplant. At the end of the trial, intervention and control groups were also similar in first visit (16.1% versus 13.8%; difference, 2.3%; 95% confidence interval, -0.8% to 5.5%), waitlisting (16.3% versus 13.8%; difference, 2.5%; 95% confidence interval, -1.2% to 6.1%), deceased donor transplantation (2.8% versus 2.2%; difference, 0.6%; 95% confidence interval, -0.8% to 2.1%), and living donor transplantation (1.2% versus 1.0%; difference, 0.1%; 95% confidence interval, -0.9% to 1.1%). CONCLUSIONS Use of trained kidney transplant recipients as navigators did not increase first visits to a transplant center, waiting list placement, and receipt of deceased or living donor transplants.
Collapse
Affiliation(s)
| | | | - Kate Greenway
- Transplant Center, Ohio State University, Columbus, Ohio
| | - Cindy M. Kamps
- Transplant Center, University of Kentucky, Lexington, Kentucky
| | - Derrick Wilson
- Transplant Center, Lutheran Hospital, Fort Wayne, Indiana
| | | | | | - Anne Huml
- Center for Reducing Health Disparities and
- Division of Nephrology, University Hospitals, Cleveland, Ohio; and
- Division of Nephrology, MetroHealth Medical Center, Cleveland, Ohio
| | | | - John T. Ducker
- Transplant Center, Lutheran Hospital, Fort Wayne, Indiana
| | - Roberto Gedaly
- Transplant Center, University of Kentucky, Lexington, Kentucky
| | | | - Todd Pesavento
- Transplant Center, Ohio State University, Columbus, Ohio
| | - Ashwini R. Sehgal
- Center for Reducing Health Disparities and
- Departments of Population and Quantitative Health Sciences and
- Bioethics, Case Western Reserve University, Cleveland, Ohio
- Division of Nephrology, MetroHealth Medical Center, Cleveland, Ohio
| |
Collapse
|
44
|
Patzer RE, McPherson L, Basu M, Mohan S, Wolf M, Chiles M, Russell A, Gander JC, Friedewald JJ, Ladner D, Larsen CP, Pearson T, Pastan S. Effect of the iChoose Kidney decision aid in improving knowledge about treatment options among transplant candidates: A randomized controlled trial. Am J Transplant 2018; 18:1954-1965. [PMID: 29446209 PMCID: PMC6510396 DOI: 10.1111/ajt.14693] [Citation(s) in RCA: 55] [Impact Index Per Article: 7.9] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 09/10/2017] [Revised: 01/05/2018] [Accepted: 02/04/2018] [Indexed: 01/25/2023]
Abstract
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).
Collapse
Affiliation(s)
- Rachel E. Patzer
- Division of Transplantation, Department of Surgery, Emory University School of Medicine, Atlanta, GA, USA
| | - Laura McPherson
- Division of Transplantation, Department of Surgery, Emory University School of Medicine, Atlanta, GA, USA
| | - Mohua Basu
- Division of Transplantation, Department of Surgery, Emory University School of Medicine, Atlanta, GA, USA
| | - Sumit Mohan
- Division of Nephrology, Department of Medicine, Columbia University Medical Center, New York, NY, USA
| | - Michael Wolf
- Northwestern University Comprehensive Transplant Center, Chicago, IL, USA
| | - Mariana Chiles
- Division of Nephrology, Department of Medicine, Columbia University Medical Center, New York, NY, USA
| | - Allison Russell
- Northwestern University Comprehensive Transplant Center, Chicago, IL, USA
| | - Jennifer C. Gander
- Division of Transplantation, Department of Surgery, Emory University School of Medicine, Atlanta, GA, USA
| | - John J. Friedewald
- Northwestern University Comprehensive Transplant Center, Chicago, IL, USA
| | - Daniela Ladner
- Northwestern University Comprehensive Transplant Center, Chicago, IL, USA
| | - Christian P. Larsen
- Division of Transplantation, Department of Surgery, Emory University School of Medicine, Atlanta, GA, USA
| | - Thomas Pearson
- Division of Transplantation, Department of Surgery, Emory University School of Medicine, Atlanta, GA, USA
| | - Stephen Pastan
- Renal Division, Department of Medicine, Emory University School of Medicine, Atlanta, GA, USA
| |
Collapse
|
45
|
Mucsi I, Novak M, Toews D, Waterman A. Explore Transplant Ontario: Adapting the Explore Transplant Education Program to Facilitate Informed Decision Making About Kidney Transplantation. Can J Kidney Health Dis 2018; 5:2054358118789369. [PMID: 30057772 PMCID: PMC6058418 DOI: 10.1177/2054358118789369] [Citation(s) in RCA: 13] [Impact Index Per Article: 1.9] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 01/27/2018] [Accepted: 04/05/2018] [Indexed: 01/10/2023] Open
Abstract
Purpose: In this article, we describe a province-wide collaborative project in which we adapted the Explore Transplant (ET) education program for use in Ontario, Canada, to develop Explore Transplant Ontario (ETO). Kidney transplantation (KT), especially living donor kidney transplantation (LDKT), is the best treatment for many patients with end-stage kidney disease (ESKD), with the best patient survival and quality of life and also reduced health care costs. Yet KT and LDKT are underutilized both internationally and in Canada. Research has demonstrated that patients with ESKD who receive personalized transplant education are more likely to complete the transplant evaluation process and to receive LDKT compared with patients who do not receive this education. Sources of information: Research expertise of the lead authors and Medline search of studies assessing the impact of education interventions on access to KT and LDKT. Methods: The ET program, developed by Dr Amy Waterman, has been used in thousands of patients with ESKD in the United States to enhance KT and LDKT knowledge. To adapt this program for use in Ontario, we convened a working group, including patient representatives, nephrologists, transplant coordinators, dialysis nurses, and patient educators from all Ontario KT centers and selected dialysis units. In an iterative process concluding in a consensus workshop, the working group reviewed and edited the text of the original ET program and suggested changes to the videos. Key findings: The adapted program reflects the Ontario health care environment and responds to the specific needs of patients with chronic kidney disease (CKD) in the province. The videos feature Ontario transplant nephrologists, transplant coordinators, and patients, representative of the ethnic diversity in Ontario, sharing their transplant experience and expertise. Despite the changes, ETO is consistent with the quality and style of the original ET program. At the end of this article, we summarize subsequent steps to test and utilize ETO. Those projects, specifically the ETO pilot study and a multicomponent quality improvement initiative to increase utilization of KT and LDKT across Ontario, will be described in full in future papers. Limitations: This article describes a provincial initiative; therefore, our findings may not be fully generalizable without further considerations. The adapted education program has not yet been tested in large trial for effectiveness. Implications: As a program grounded in the theoretical model of behavior change, ETO places patients with ESKD at the center of a complex process of navigating renal replacement therapy modalities and acknowledges a broad range of patient values, priorities, and states of readiness to pursue KT.
Collapse
Affiliation(s)
- Istvan Mucsi
- Division of Nephrology, Multi-Organ Transplant Program, Toronto General Hospital, University Health Network and University of Toronto, ON, Canada
| | - Marta Novak
- Centre for Mental Health, University Health Network and Department of Psychiatry, University of Toronto, ON, Canada
| | - Deanna Toews
- Division of Nephrology, Multi-Organ Transplant Program, Toronto General Hospital, University Health Network and University of Toronto, ON, Canada
| | - Amy Waterman
- Division of Nephrology, University of California, Los Angeles, CA, USA.,Terasaki Research Institute, Los Angeles, CA, USA
| |
Collapse
|
46
|
Sieverdes JC, Treiber FA, Mueller M, Nemeth LS, Brunner-Jackson B, Anderson A, Baliga PK. Living Organ Video Educated Donors Program for Kidney Transplant-eligible African Americans to Approach Potential Donors: A Proof of Concept. Transplant Direct 2018; 4:e357. [PMID: 30123830 PMCID: PMC6089514 DOI: 10.1097/txd.0000000000000799] [Citation(s) in RCA: 6] [Impact Index Per Article: 0.9] [Reference Citation Analysis] [Abstract] [Grants] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 11/20/2017] [Accepted: 04/17/2018] [Indexed: 12/12/2022] Open
Abstract
BACKGROUND The purpose of the Living Organ Video Educated Donors (LOVED) program is to address living donor kidney transplantation (LDKT) disparities in African Americans who experience half the rates of LDKTs compared with whites in the United States. METHODS LOVED is an iterative-designed, distance-based, navigator-led, mobile health educational program, developed via guidance from patients, Self-determination Theory and Social Cognitive Theory. The purpose of this study was to assess the feasibility of LOVED using a proof-of-concept design to increase African Americans' knowledge about the living donor process to improve their willingness to approach others about being a potential kidney donor. The 8-week LOVED program consisted of (1) a computer tablet-delivered education program, (2) group video chat sessions with an African American LDKT recipient navigator, and (3) additional communication between group members and the navigator. RESULTS Twenty-five participants completed the LOVED study. Poststudy focus groups were analyzed using inductive and deductive qualitative descriptive techniques and analysts found 6 themes reporting LOVED being highly acceptable with the program being overall empowering and helpful. The study had 0% attrition, 90.9% adherence to the education videos and 88% adherence to the video chat sessions. Surveys showed statistically significant improvements in LDKT knowledge, higher willingness to communicate to others about their need, lower donor concerns, and higher self-efficacy about LDKT. CONCLUSIONS Findings indicate that participation in LOVED can lead to improvements in predictors to increase the number of evaluations and LDKTs in African Americans; however, these findings need to be confirmed in adequately powered, randomized controlled trials. Using LOVED may reduce barriers to broadly address LDKT disparities. Findings from this study will inform the design of a future statewide randomized controlled trials.
Collapse
Affiliation(s)
- John C. Sieverdes
- College of Nursing, Medical University of South Carolina, Charleston, SC
| | - Frank A. Treiber
- College of Nursing, Medical University of South Carolina, Charleston, SC
- College of Medicine, Medical University of South Carolina, Charleston, SC
| | - Martina Mueller
- College of Nursing, Medical University of South Carolina, Charleston, SC
| | - Lynne S. Nemeth
- College of Nursing, Medical University of South Carolina, Charleston, SC
| | | | - Ashley Anderson
- College of Nursing, Medical University of South Carolina, Charleston, SC
| | | |
Collapse
|
47
|
Gordon EJ, Lee J, Kang RH, Caicedo JC, Holl JL, Ladner DP, Shumate MD. A complex culturally targeted intervention to reduce Hispanic disparities in living kidney donor transplantation: an effectiveness-implementation hybrid study protocol. BMC Health Serv Res 2018; 18:368. [PMID: 29769080 PMCID: PMC5956564 DOI: 10.1186/s12913-018-3151-5] [Citation(s) in RCA: 32] [Impact Index Per Article: 4.6] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 12/07/2017] [Accepted: 04/25/2018] [Indexed: 01/20/2023] Open
Abstract
BACKGROUND The shortage of organs for kidney transplantation for patients with end-stage renal disease (ESRD) is magnified in Hispanics/Latin Americans in the United States. Living donor kidney transplantation (LDKT) is the treatment of choice for ESRD. However, compared to their representation on the transplant waitlist, fewer Hispanics receive a LDKT than non-Hispanic whites. Barriers to LDKT for Hispanics include: lack of knowledge, cultural concerns, and language barriers. Few interventions have been designed to reduce LDKT disparities. This study aims to reduce Hispanic disparities in LDKT through a culturally targeted intervention. METHODS/DESIGN Using a prospective effectiveness-implementation hybrid design involving pre-post intervention evaluation with matched controls, we will implement a complex culturally targeted intervention at two transplant centers in Dallas, TX and Phoenix, AZ. The goal of the study is to evaluate the effect of Northwestern Medicine's® Hispanic Kidney Transplant Program's (HKTP) key culturally targeted components (outreach, communication, education) on Hispanic LDKT rates over five years. The main hypothesis is that exposure to the HKTP will reduce disparities by increasing the ratio of Hispanic to non-Hispanic white LDKTs and the number of Hispanic LDKTs. We will also examine other process and outcome measures including: dialysis patient outreach, education session attendance, marketing efforts, Hispanic patients added to the waitlist, Hispanic potential donors per potential recipient, and satisfaction with culturally competent care. We will use mixed methods based on the Promoting Action on Research Implementation in Health Services (revised PARIHS) and the Consolidated Framework for Implementation Research (CFIR) frameworks to formatively evaluate the fidelity and innovative adaptations to HKTP's components at both study sites, to identify moderating factors that most affect implementation fidelity, and to identify adaptations that positively and negatively affect outcomes for patients. DISCUSSION Our study will provide new knowledge about implementing culturally targeted interventions and their impact on reducing health disparities. Moreover, the study of a complex organizational-level intervention's implementation over five years is rare in implementation science; as such, this study is poised to contribute new knowledge to the factors influencing how organizational-level interventions are sustained over time. TRIAL REGISTRATION (ClinicalTrials.gov registration # NCT03276390 , date of registration: 9-7-17, retrospectively registered).
Collapse
Affiliation(s)
- Elisa J Gordon
- Department of Surgery-Division of Transplantation, Center for Healthcare Studies, Center for Bioethics and Medical Humanities, Northwestern University Feinberg School of Medicine, 633 N. St. Clair, 20th FL, Chicago, IL, 60611, USA.
| | - Jungwha Lee
- Preventive Medicine and Biostatistics Collaboration Center, Northwestern University Feinberg School of Medicine, 680 N. Lake Shore Drive, Suite 1400, Chicago, IL, 60611, USA
| | - Raymond H Kang
- Center for Healthcare Studies, Northwestern University Transplant Outcomes Research Collaborative (NUTORC), Northwestern University Feinberg School of Medicine, 633 N. St. Clair, 20th FL, Chicago, IL, 60611, USA
| | - Juan Carlos Caicedo
- Department of Surgery-Division of Transplantation, Northwestern University Feinberg School of Medicine, 676 N. St. Clair, 19th FL, Chicago, IL, 60611, USA
| | - Jane L Holl
- Center for Healthcare Studies, Northwestern University Feinberg School of Medicine, 633 N. St. Clair, 20th FL, Chicago, IL, 60611, USA
| | - Daniela P Ladner
- Department of Surgery-Division of Transplantation, Northwestern University Feinberg School of Medicine, 676 N. St. Clair, 19th FL, Chicago, IL, 60611, USA
| | - Michelle D Shumate
- Department of Communication Studies, Northwestern University, 240 Campus Drive, Rm 2-118, Evanston, IL, 60208, USA
| |
Collapse
|
48
|
Hunt HF, Rodrigue JR, Dew MA, Schaffer RL, Henderson ML, Bloom R, Kacani P, Shim P, Bolton L, Sanchez W, Lentine KL. Strategies for Increasing Knowledge, Communication, and Access to Living Donor Transplantation: an Evidence Review to Inform Patient Education. CURRENT TRANSPLANTATION REPORTS 2018; 5:27-44. [PMID: 30873335 DOI: 10.1007/s40472-018-0181-1] [Citation(s) in RCA: 27] [Impact Index Per Article: 3.9] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 01/13/2023]
Abstract
Purpose of review Inadequate knowledge of the benefits, risks and opportunities for living donation is an important, potentially modifiable barrier to living donor transplantation. We assessed the current state of the evidence regarding strategies to increase knowledge, communication and access to living donor transplantation, as reported in peer-reviewed medical literature. Recent Findings Nineteen studies were reviewed, categorized as programs evaluated in randomized controlled trials (8 studies) and programs supported by observational (non-randomized) studies (11 studies). Content extraction demonstrated that comprehensive education about living donation and living donor transplantation involves multiple learners - the transplant candidate, potential living donors, and social support networks - and requires communicating complex information about the risks and benefits of donation, transplantation and alternative therapies to these different audiences. Transplant centers can help transplant patients learn about living donor transplantation through a variety of formats and modalities, including center-based, home-based and remote technology-based education, outreach to dialysis centers, and social media. Evaluation of these strategies and program themes informed a new Organ Procurement and Transplantation Network (OPTN)/United Network for Organ Sharing (UNOS) public education brochure. Summary Increasing transplant candidate knowledge and comfort in talking about living donation and transplantation can reduce educational barriers to pursuit of living donor transplants. Ongoing efforts are needed to develop, refine and disseminate educational programs to help improve transplant access for more patients in need of organ donors.
Collapse
Affiliation(s)
- Heather F Hunt
- Organ Procurement and Transplantation Network (OPTN)/United Network for Organ Sharing (UNOS) Living Donor Committee, Richmond, VA.,LIVE ON Organ Donation, Inc., Longmeadow, MA
| | - James R Rodrigue
- Organ Procurement and Transplantation Network (OPTN)/United Network for Organ Sharing (UNOS) Living Donor Committee, Richmond, VA.,Beth Israel Deaconess Transplant Institute, Boston, MA
| | - Mary Amanda Dew
- Organ Procurement and Transplantation Network (OPTN)/United Network for Organ Sharing (UNOS) Living Donor Committee, Richmond, VA.,University of Pittsburgh School of Medicine and Medical Center, Pittsburgh, PA
| | - Randolph L Schaffer
- Organ Procurement and Transplantation Network (OPTN)/United Network for Organ Sharing (UNOS) Living Donor Committee, Richmond, VA.,Scripps Clinic, La Jolla, CA
| | - Macey L Henderson
- Organ Procurement and Transplantation Network (OPTN)/United Network for Organ Sharing (UNOS) Living Donor Committee, Richmond, VA.,Johns Hopkins University, Transplant Center & School of Nursing, Baltimore, MD
| | - Randee Bloom
- Organ Procurement and Transplantation Network (OPTN)/United Network for Organ Sharing (UNOS) Living Donor Committee, Richmond, VA
| | - Patrick Kacani
- Organ Procurement and Transplantation Network (OPTN)/United Network for Organ Sharing (UNOS) Living Donor Committee, Richmond, VA
| | - Pono Shim
- Organ Procurement and Transplantation Network (OPTN)/United Network for Organ Sharing (UNOS) Living Donor Committee, Richmond, VA
| | - Lee Bolton
- Organ Procurement and Transplantation Network (OPTN)/United Network for Organ Sharing (UNOS) Living Donor Committee, Richmond, VA
| | - William Sanchez
- Organ Procurement and Transplantation Network (OPTN)/United Network for Organ Sharing (UNOS) Living Donor Committee, Richmond, VA.,Mayo Clinic, Rochester, MN
| | - Krista L Lentine
- Organ Procurement and Transplantation Network (OPTN)/United Network for Organ Sharing (UNOS) Living Donor Committee, Richmond, VA.,Saint Louis University School of Medicine & Transplant Center, St. Louis, MO
| |
Collapse
|
49
|
St Clair Russell J, Boulware LE. End-stage renal disease treatment options education: What matters most to patients and families. Semin Dial 2018; 31:122-128. [PMID: 29315798 DOI: 10.1111/sdi.12665] [Citation(s) in RCA: 8] [Impact Index Per Article: 1.1] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 12/12/2022]
Abstract
Treatment modality education can offer many important benefits to patients and their families. Evidence suggests such education can increase use of home dialysis, reduce catheter use, decrease 90-day mortality, and increase transplantation. While these benefits are encouraging, not all patients are offered options education and when they are, it may not be presented in a way that is immediately applicable to them and their lives. Furthermore, little is known regarding specific characteristics (e.g. format such as group or individual or in-person or online, duration, teaching methods, location, content) of educational programs that are most successful. No single approach has emerged as a best practice. In the absence of such evidence, adult learning principles, such as involving patients and families in the development programs and materials, can serve as a guide for educational development. Adult learning principles can enhance options education, evolving them from information delivery to a person-centered, values-based endeavor that helps match treatment to values and lifestyle.
Collapse
Affiliation(s)
| | - L Ebony Boulware
- Division of General Internal Medicine, Duke University School of Medicine, Durham, NC, USA
| |
Collapse
|
50
|
Purnell TS, Luo X, Cooper LA, Massie AB, Kucirka LM, Henderson ML, Gordon EJ, Crews DC, Boulware LE, Segev DL. Association of Race and Ethnicity With Live Donor Kidney Transplantation in the United States From 1995 to 2014. JAMA 2018; 319:49-61. [PMID: 29297077 PMCID: PMC5833543 DOI: 10.1001/jama.2017.19152] [Citation(s) in RCA: 210] [Impact Index Per Article: 30.0] [Reference Citation Analysis] [Abstract] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 01/04/2023]
Abstract
IMPORTANCE Over the past 2 decades, there has been increased attention and effort to reduce disparities in live donor kidney transplantation (LDKT) for black, Hispanic, and Asian patients with end-stage kidney disease. The goal of this study was to investigate whether these efforts have been successful. OBJECTIVE To estimate changes over time in racial/ethnic disparities in LDKT in the United States, accounting for differences in death and deceased donor kidney transplantation. DESIGN, SETTING, AND PARTICIPANTS A secondary analysis of a prospectively maintained cohort study conducted in the United States of 453 162 adult first-time kidney transplantation candidates included in the Scientific Registry of Transplant Recipients between January 1, 1995, and December 31, 2014, with follow-up through December 31, 2016. EXPOSURES Race/ethnicity. MAIN OUTCOMES AND MEASURES The primary study outcome was time to LDKT. Multivariable Cox proportional hazards and competing risk models were constructed to assess changes in racial/ethnic disparities in LDKT among adults on the deceased donor kidney transplantation waiting list and interaction terms were used to test the statistical significance of temporal changes in racial/ethnic differences in receipt of LDKT. The adjusted subhazard ratios are estimates derived from the multivariable competing risk models. Data were categorized into 5-year increments (1995-1999, 2000-2004, 2005-2009, 2010-2014) to allow for an adequate sample size in each analytical cell. RESULTS Among 453 162 adult kidney transplantation candidates (mean [SD] age, 50.9 [13.1] years; 39% were women; 48% were white; 30%, black; 16%, Hispanic; and 6%, Asian), 59 516 (13.1%) received LDKT. Overall, there were 39 509 LDKTs among white patients, 8926 among black patients, 8357 among Hispanic patients, and 2724 among Asian patients. In 1995, the cumulative incidence of LDKT at 2 years after appearing on the waiting list was 7.0% among white patients, 3.4% among black patients, 6.8% among Hispanic patients, and 5.1% among Asian patients. In 2014, the cumulative incidence of LDKT was 11.4% among white patients, 2.9% among black patients, 5.9% among Hispanic patients, and 5.6% among Asian patients. From 1995-1999 to 2010-2014, racial/ethnic disparities in the receipt of LDKT increased (P < .001 for all statistical interaction terms in adjusted models comparing white patients vs black, Hispanic, and Asian patients). In 1995-1999, compared with receipt of LDKT among white patients, the adjusted subhazard ratio was 0.45 (95% CI, 0.42-0.48) among black patients, 0.83 (95% CI, 0.77-0.88) among Hispanic patients, and 0.56 (95% CI, 0.50-0.63) among Asian patients. In 2010-2014, compared with receipt of LDKT among white patients, the adjusted subhazard ratio was 0.27 (95% CI, 0.26-0.28) among black patients, 0.52 (95% CI, 0.50-0.54) among Hispanic patients, and 0.42 (95% CI, 0.39-0.45) among Asian patients. CONCLUSIONS AND RELEVANCE Among adult first-time kidney transplantation candidates in the United States who were added to the deceased donor kidney transplantation waiting list between 1995 and 2014, disparities in the receipt of live donor kidney transplantation increased from 1995-1999 to 2010-2014. These findings suggest that national strategies for addressing disparities in receipt of live donor kidney transplantation should be revisited.
Collapse
Affiliation(s)
- Tanjala S. Purnell
- Division of Transplantation, Department of Surgery, Johns Hopkins School of Medicine, Baltimore, Maryland
- Department of Epidemiology, Johns Hopkins Bloomberg School of Public Health, Baltimore, Maryland
- Department of Health Behavior and Society, Johns Hopkins Bloomberg School of Public Health, Baltimore, Maryland
- Johns Hopkins Center for Health Equity, Johns Hopkins University, Baltimore, Maryland
| | - Xun Luo
- Division of Transplantation, Department of Surgery, Johns Hopkins School of Medicine, Baltimore, Maryland
| | - Lisa A. Cooper
- Department of Epidemiology, Johns Hopkins Bloomberg School of Public Health, Baltimore, Maryland
- Department of Health Behavior and Society, Johns Hopkins Bloomberg School of Public Health, Baltimore, Maryland
- Johns Hopkins Center for Health Equity, Johns Hopkins University, Baltimore, Maryland
- Division of General Internal Medicine, Johns Hopkins School of Medicine, Baltimore, Maryland
| | - Allan B. Massie
- Division of Transplantation, Department of Surgery, Johns Hopkins School of Medicine, Baltimore, Maryland
- Department of Epidemiology, Johns Hopkins Bloomberg School of Public Health, Baltimore, Maryland
| | - Lauren M. Kucirka
- Division of Transplantation, Department of Surgery, Johns Hopkins School of Medicine, Baltimore, Maryland
- Department of Epidemiology, Johns Hopkins Bloomberg School of Public Health, Baltimore, Maryland
| | - Macey L. Henderson
- Division of Transplantation, Department of Surgery, Johns Hopkins School of Medicine, Baltimore, Maryland
| | - Elisa J. Gordon
- Department of Surgery, Northwestern University Feinberg School of Medicine, Chicago, Illinois
| | - Deidra C. Crews
- Johns Hopkins Center for Health Equity, Johns Hopkins University, Baltimore, Maryland
- Division of Nephrology, Department of Medicine, Johns Hopkins School of Medicine, Baltimore, Maryland
| | - L. Ebony Boulware
- Division of General Internal Medicine, Duke University School of Medicine, Durham, North Carolina
| | - Dorry L. Segev
- Division of Transplantation, Department of Surgery, Johns Hopkins School of Medicine, Baltimore, Maryland
- Department of Epidemiology, Johns Hopkins Bloomberg School of Public Health, Baltimore, Maryland
| |
Collapse
|