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1.
Am J Transplant ; 24(1): 46-56, 2024 Jan.
Article in English | MEDLINE | ID: mdl-37739347

ABSTRACT

Kidney paired donation (KPD) is a major innovation that is changing the landscape of kidney transplantation in the United States. We used the 2006-2021 United Network for Organ Sharing data to examine trends over time. KPD is increasing, with 1 in 5 living donor kidney transplants (LDKTs) in 2021 facilitated by KPD. The proportion of LDKT performed via KPD was comparable for non-Whites and Whites. An increasing proportion of KPD transplants are going to non-Whites. End-chain recipients are not identified in the database. To what extent these trends reflect how end-chain kidneys are allocated, as opposed to increase in living donation among minorities, remains unclear. Half the LDKT in 2021 in sensitized (panel reactive antibody ≥ 80%) and highly sensitized (panel reactive antibody ≥ 98%) groups occurred via KPD. Yet, the proportion of KPD transplants performed in sensitized recipients has declined since 2013, likely due to changes in the deceased donor allocation policies and newer KPD strategies such as compatible KPD. In 2021, 40% of the programs reported not performing any KPD transplants. Our study highlights the need for understanding barriers to pursuing and expanding KPD at the center level and the need for more detailed and accurate data collection at the national level.


Subject(s)
Kidney Transplantation , Tissue and Organ Procurement , Humans , United States , Living Donors , Tissue and Organ Harvesting , Kidney
2.
Pediatr Transplant ; 28(1): e14657, 2024 Feb.
Article in English | MEDLINE | ID: mdl-38317337

ABSTRACT

BACKGROUND: Pediatric (age < 18 years) kidney transplant (KT) candidates face increasingly complex choices. The 2014 kidney allocation system nearly doubled wait times for pediatric recipients. Given longer wait times and new ways to optimize compatibility, more pediatric candidates may consider kidney-paired donation (KPD). Motivated by this shift and the potential impact of innovations in KPD practice, we studied pediatric KPD procedures in the US from 2008 to 2021. METHODS: We describe the characteristics and outcomes of pediatric KPD recipients with comparison to pediatric non-KPD living donor kidney transplants (LDKT), pediatric LDKT recipients, and pediatric deceased donor (DDKT) recipients. RESULTS: Our study cohort includes 4987 pediatric DDKTs, 3447 pediatric non-KPD LDKTs, and 258 pediatric KPD transplants. Fewer centers conducted at least one pediatric KPD procedure compared to those that conducted at least one pediatric LDKT or DDKT procedure (67, 136, and 155 centers, respectively). Five centers performed 31% of the pediatric KPD transplants. After adjustment, there were no differences in graft failure or mortality comparing KPD recipients to non-KPD LDKT, LDKT, or DDKT recipients. DISCUSSION: We did not observe differences in transplant outcomes comparing pediatric KPD recipients to controls. Considering these results, KPD may be underutilized for pediatric recipients. Pediatric KT centers should consider including KPD in KT candidate education. Further research will be necessary to develop tools that could aid clinicians and families considering the time horizon for future KT procedures, candidate disease and histocompatibility characteristics, and other factors including logistics and donor protections.


Subject(s)
Kidney Transplantation , Tissue and Organ Procurement , Humans , United States , Child , Adolescent , Living Donors , Tissue and Organ Harvesting , Kidney Transplantation/methods , Histocompatibility , Kidney
3.
Comput Inform Nurs ; 42(2): 151-157, 2024 Feb 01.
Article in English | MEDLINE | ID: mdl-38252545

ABSTRACT

Hospitals are experiencing a nursing shortage crisis that is expected to worsen over the next decade. Acute care settings, which manage the care of very complex patients, need innovations that lessen nurses' workload burden while ensuring safe patient care and outcomes. Thus, a pilot study was conducted to evaluate the feasibility of implementing a large-scale acute care telenurse program, where a hospital-employed telenurse would complete admission and discharge processes for hospitalized patients virtually. In 3 months, almost 9000 (67%) of patient admissions and discharges were conducted by an acute care telenurse, saving the bedside nurse an average of 45 minutes for each admission and discharge. Preliminary benefits to the program included more uninterrupted time with patients, more complete hospital admission and discharge documentation, and positive patient and nurse feedback about the program.


Subject(s)
Nursing Staff, Hospital , Telenursing , Humans , Pilot Projects , Feasibility Studies , Workload , Workforce
4.
Clin Transplant ; 37(4): e14908, 2023 04.
Article in English | MEDLINE | ID: mdl-36622257

ABSTRACT

BACKGROUND: The Scientific Registry of Transplant Recipients (SRTR) Living Donor Collective (LDC), the first effort to create a lifetime registry for living donor candidates in the United States, requires transplant programs to register donor candidates while the SRTR conducts follow-up. METHODS: To better understand facilitators and barriers to program participation, we conducted a brief electronic survey of U.S. transplant program staff from October 26, 2021 to December 17, 2021. RESULTS: We received 132 responses, with at least one response from 87 living donor programs (46 kidney programs, 33 kidney and liver programs, and eight liver programs alone). We found 86% of program representatives strongly agreed or agreed that funding adequate to cover the cost of data collection would facilitate LDC participation, 92% agreed or strongly agreed with importance of electronic data submission options, and 74% reported that elimination of requirements to submit duplicative pre-operative information to the Organ Procurement and Transplantation Network (OPTN) would be helpful. Other potentially enabling factors include reduction in duration of OPTN postdonation follow-up requirements, ease-of-use, protection from data use for regulation, adequate data security, and equity in data access. CONCLUSION: This survey identifies potential targets to strengthen participation in the effort to create a national living donor registry in the United States. Collaboration and investment to overcome barriers to LDC participation among transplant programs are vital to generate long-term data on living donation for donor candidates, donors, and patients in need of transplant.


Subject(s)
Organ Transplantation , Tissue and Organ Procurement , Humans , United States , Living Donors , Transplant Recipients , Registries , Surveys and Questionnaires
5.
J Am Pharm Assoc (2003) ; 63(2): 681-689, 2023.
Article in English | MEDLINE | ID: mdl-36593152

ABSTRACT

BACKGROUND: Patients with early chronic kidney disease (CKD) or underlying risk factors are often unaware of their kidney test results, common causes of CKD, and ways to lower risk of disease onset/progression. OBJECTIVE: To test feasibility of a pharmacist-led intervention targeting patient education and risk factors in patients with early CKD and those at risk for CKD. PRACTICE DESCRIPTION: Ambulatory care pharmacists in community-based primary care clinics delivered kidney health education, ordered labs, and recommended medication adjustments. PRACTICE INNOVATION: We identified patients with a moderate rate of decline (≥2 mL/min/1.73 m2 per year) in estimated glomerular filtration (eGFR) at-risk for CKD or early stage CKD. An interactive workbook was designed to teach patients about kidney test results and self-management of risk factors including hypertension, type 2 diabetes, cigarette smoking, and chronic oral nonsteroidal anti-inflammatory drug use. EVALUATION METHODS: Outcomes included visit uptake, completion of annual albuminuria screening, and initiation of guideline-directed medications for CKD. Patients were surveyed pre- and post-intervention for kidney health knowledge and perceptions regarding pharmacist-provided information. RESULTS: Our sample of 20 participants had a mean eGFR of 59 mL/min/1.73 m2 and the mean eGFR decline was -4.6 mL/min/1.73 m2 per year. There were 47 visits during the pilot period from February 2021 to October 2021. Thirteen patients were missing albuminuria screening within 12 months; 2 of 9 patients with resulting labs had new microalbuminuria and were started on renoprotective medications. Patients had improved understanding of their kidney function test results and most did not consider the information scary or confusing. CONCLUSION: Barriers to enrollment included fewer participants with multiple risk factors for CKD. The pharmacists were able to engage patients in learning the importance of monitoring and self-management of kidney health. A collaborative practice agreement may enhance a similar intervention that includes initiation of renoprotective medications.


Subject(s)
Diabetes Mellitus, Type 2 , Renal Insufficiency, Chronic , Humans , Pharmacists , Albuminuria/prevention & control , Kidney , Renal Insufficiency, Chronic/diagnosis , Renal Insufficiency, Chronic/drug therapy , Glomerular Filtration Rate , Disease Progression
6.
Am J Transplant ; 22(7): 1893-1900, 2022 07.
Article in English | MEDLINE | ID: mdl-35181991

ABSTRACT

This retrospective review of the largest United States kidney exchange reports characteristics, utilization, and recipient outcomes of kidneys with simple compared to complex anatomy and extrapolates reluctance to accept these kidneys. Of 3105 transplants performed, only 12.8% were right kidneys and 23.1% had multiple renal arteries. 59.3% of centers used fewer right kidneys than expected and 12.1% transplanted zero right kidneys or kidneys with more than 1 artery. Five centers transplanted a third of these kidneys (35.8% of right kidneys and 36.7% of kidneys with multiple renal arteries). 22.5% and 25.5% of centers currently will not entertain a match offer for a left or right kidney with more than one artery, respectively. There were no significant differences in all-cause graft failure or death-censored graft loss for kidneys with multiple arteries, and a very small increased risk of graft failure for right kidneys versus left of limited clinical relevance for most recipients. Kidneys with complex anatomy can be used with excellent outcomes at many centers. Variation in use (lack of demand) for these kidneys reduces the number of transplants, so systems to facilitate use could increase demand. We cannot know how many donors are turned away because perceived demand is limited.


Subject(s)
Kidney Diseases , Kidney Transplantation , Transplants , Graft Survival , Humans , Kidney/blood supply , Kidney Diseases/etiology , Kidney Transplantation/adverse effects , Living Donors , Retrospective Studies , Tissue Donors , Treatment Outcome , United States
7.
Am J Transplant ; 22(1): 266-273, 2022 01.
Article in English | MEDLINE | ID: mdl-34467618

ABSTRACT

Increasing numbers of compatible pairs are choosing to enter paired exchange programs, but motivations, outcomes, and system-level effects of participation are not well described. Using a linkage of the Scientific Registry of Transplant Recipients and National Kidney Registry, we compared outcomes of traditional (originally incompatible) recipients to originally compatible recipients using the Kaplan-Meier method. We identified 154 compatible pairs. Most pairs sought to improve HLA matching. Compared to the original donor, actual donors were younger (39 vs. 50 years, p < .001), less often female (52% vs. 68%, p < .01), higher BMI (27 vs. 25 kg/m², p = .03), less frequently blood type O (36% vs. 80%, p < .001), and had higher eGFR (99 vs. 94 ml/min/1.73 m², p = .02), with a better LKDPI (median 7 vs. 22, p < .001). We observed no differences in graft failure or mortality. Compatible pairs made 280 additional transplants possible, many in highly sensitized recipients with long wait times. Compatible pair recipients derived several benefits from paired exchange, including better donor quality. Living donor pairs should receive counseling regarding all options available, including kidney paired donation. As more compatible pairs choose to enter exchange programs, consideration should be given to optimizing compatible pair and hard-to-transplant recipient outcomes.


Subject(s)
Kidney Transplantation , Tissue and Organ Procurement , Donor Selection , Female , Humans , Living Donors , Motivation , Transplant Recipients
8.
Am J Transplant ; 21(3): 1186-1196, 2021 03.
Article in English | MEDLINE | ID: mdl-33245618

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.


Subject(s)
Kidney Transplantation , Ethnicity , Expert Systems , Health Knowledge, Attitudes, Practice , Humans , Living Donors
9.
Am J Transplant ; 21(3): 1128-1137, 2021 03.
Article in English | MEDLINE | ID: mdl-32506647

ABSTRACT

The National Kidney Registry (NKR) Advanced Donation Program enables living donors the opportunity to donate altruistically, or in advance of a potential recipient's transplant, and to receive a voucher that can be redeemed for a future transplant facilitated by the NKR. Family vouchers allow a donor to identify multiple individuals within their immediate family, with the first person in that group in need of a transplant being prioritized to receive a kidney. An increase in vouchers introduces concerns that demand for future voucher redemptions could exceed the supply of available donors and kidneys. A Monte Carlo simulation model was constructed to estimate the annual number of voucher redemptions relative to the number of kidneys available over a 50-year time horizon under several projected scenarios for growth of the program. In all simulated scenarios, the number of available kidneys exceeded voucher redemptions every year. While not able to account for all real-life scenarios, this simulation study found that the NKR should be able to satisfy the likely redemption of increasing numbers of vouchers under a range of possible scenarios over a 50-year time horizon. This modeling exercise suggests that a donor family's future needs can be satisfied through the voucher program.


Subject(s)
Kidney Transplantation , Tissue and Organ Procurement , Humans , Kidney , Living Donors , Registries
10.
Clin Transplant ; 35(10): e14422, 2021 10.
Article in English | MEDLINE | ID: mdl-34247420

ABSTRACT

BACKGROUND: Despite the institution of a new Kidney Allocation System in 2014, A2/A2B to B transplantation has not increased as expected. The current Organ Procurement and Transplantation Network policy requires subtyping on two separate occasions, and in the setting of discrepant results, defaulting to the A1 subtype. However, there is significant inherent variability in the serologic assays used for blood group subtyping and genotyping is rarely done. METHODS: The National Kidney Registry, a kidney paired donation (KPD) program, performs serological typing on all A/AB donors, and in cases of non-A1/non-A1B donors, confirmatory genotyping is performed. RESULTS: Between 2/18/2018 and 9/15/2020, 13.0% (145) of 1,111 type A donors registered with the NKR were ultimately subtyped as A2 via genotyping. Notably, 49.6% (72) of these were subtyped as A1 at their donor center, and in accordance with OPTN policy, ineligible for allocation as A2. CONCLUSION: Inaccurate A2 subtyping represents a significant lost opportunity in transplantation, especially in KPD where A2 donors can not only facilitate living donor transplantation for O and highly sensitized candidates, but can also facilitate additional living donor transplants. This study highlights the need for improved accuracy of subtyping technique, and the need for policy changes encouraging optimal utilization of A2 donor kidneys.


Subject(s)
Kidney Transplantation , Tissue and Organ Procurement , Blood Grouping and Crossmatching , Humans , Kidney , Living Donors
11.
Blood Purif ; 50(4-5): 655-661, 2021.
Article in English | MEDLINE | ID: mdl-33440381

ABSTRACT

BACKGROUND: Policy changes including the Advancing American Kidney Health initiative and CMS's ESRD Quality Incentive Program recommend increasing educational initiatives within dialysis centers to increase living kidney donor transplant (LDKT) rates. LDKT education can be challenging in dialysis centers due to limited provider time to educate, patient fears or reluctance to learn about LDKT, and difficulty educating potential living donors. New educational innovations that increase dialysis patient curiosity about pursuing LDKT are needed. SUMMARY: Digital first-person storytelling, or the sharing of narratives by individuals in their own words, is a culturally competent, health literate, patient-driven approach to expanding patient understanding about LDKT that can supplement traditional educational strategies without additional burden for dialysis providers. The Living Donation Storytelling Project is an online digital library of over 150 video stories told by diverse kidney recipients, donors, those in search of a donor, and their family/friends. By honestly discussing how they overcame fears and challenges related to LDKT, these stories address sensitive topics that can be hard for providers to introduce by using easily accessible learning methodology that may better connect with racial/ethnic minorities, scared patients, and patients facing health literacy challenges. Key Messages: Supplementing traditional educational approaches with digital storytelling may help overcome time limitations in educating for busy providers, boost providers' own knowledge about LDKT, serve as a free supplemental resource for patients, reduce fears and increase self-efficacy about transplant, help more patients to share about transplant with their social networks, and ultimately increase LDKT rates.


Subject(s)
Health Knowledge, Attitudes, Practice , Kidney Transplantation , Patient Education as Topic , Humans , Living Donors , Patient Education as Topic/methods , Renal Dialysis
13.
Am J Kidney Dis ; 74(5): 640-649, 2019 11.
Article in English | MEDLINE | ID: mdl-31227225

ABSTRACT

RATIONALE & OBJECTIVE: Compared with others, black and low-income patients receiving dialysis are less likely to receive kidney transplantation (KT) education within dialysis centers. We examined the efficacy of 2 supplementary KT education approaches delivered directly to patients. STUDY DESIGN: Prospective, 3-arm parallel-group, randomized, controlled trial. SETTINGS & PARTICIPANTS: Adult, black, and white low-income patients receiving dialysis in Missouri. INTERVENTION: Patients were randomly assigned to 1 of 3 educational conditions: (1) standard of care, usual KT education provided in dialysis centers (control); (2) Explore Transplant @ Home patient-guided, 4 modules of KT education sent directly to patients using print, video, and text messages; and (3) Explore Transplant @ Home educator-guided, the patient-guided intervention plus 4 telephonic discussions with an educator. OUTCOMES: Primary: patient knowledge of living (LDKT) and deceased donor KT (DDKT). Secondary: informed decision making, change in attitudes in favor of LDKT and DDKT, and change in the number of new steps taken toward KT. RESULTS: In intent-to-treat analyses, patients randomly assigned to educator- and patient-guided interventions had greater knowledge gains (1.4 point increase) than control patients (0.8 point increase; P=0.02 and P=0.01, respectively). Compared with control patients, more patients randomly assigned to educator- and patient-guided interventions were able to make informed decisions about starting KT evaluation (82% vs 91% and 95%; P=0.003), pursuing DDKT (70% vs 84% and 84%; P=0.003), and pursuing LDKT (73% vs 91% and 92%; P<0.001). LIMITATIONS: Potential contamination because of patient-level randomization; no assessment of clinical end points. CONCLUSIONS: Education presented directly to dialysis patients, with or without coaching by telephone, increased dialysis patients' KT knowledge and informed decision making without increasing educational burden on providers. FUNDING SOURCE: This project was funded by the National Institutes of Health and Health Resources and Services Administration. TRIAL REGISTRATION: Registered at ClinicalTrials.gov with study number NCT02268682.


Subject(s)
Black or African American/education , Kidney Failure, Chronic/therapy , Kidney Transplantation/education , Patient Education as Topic/methods , Poverty/ethnology , Adolescent , Adult , Aged , Female , Humans , Incidence , Kidney Failure, Chronic/ethnology , Male , Middle Aged , Prospective Studies , Renal Dialysis , Tissue Donors , United States/epidemiology , Video Recording , Young Adult
14.
Clin Transplant ; 33(1): e13447, 2019 01.
Article in English | MEDLINE | ID: mdl-30421841

ABSTRACT

BACKGROUND: As transplant centers start leveraging Twitter for information dissemination and public engagement, it is important to understand current living solid organ donation-related Twitter use. METHODS: We identified public Twitter profiles available in 01/2017 that referenced living organ donation and analyzed the use of donation-related Twitter handles, names, or profile information. Tweets were manually abstracted and qualitatively analyzed for common themes. Social media influence of those tweeting about living donation was evaluated using Klout score. RESULTS: We identified 93 donors, 61 professionals, 12 hospitals, and 19 organizations that met eligibility criteria. Social media influence was similar across these groups (P = 0.4). Donors (16%) and organizations (23%) were more likely than professionals (7%) or hospitals (0%) to include transplant-related educational information in their profiles (P = 0.007). Living donation-related tweets were most commonly donation stories (33%), news reports (20%), reports about new transplant research (15%), and sharing transplant candidates' searches for donors (14%). CONCLUSIONS: This exploratory study of living donors and transplant professionals, hospitals, and organizations on Twitter provides insight into how the social media platform may be used to communicate about and disseminate information about living donation.


Subject(s)
Health Education/methods , Information Dissemination/methods , Living Donors/supply & distribution , Organ Transplantation/psychology , Social Media/statistics & numerical data , Surgeons/statistics & numerical data , Tissue and Organ Procurement/organization & administration , Humans , Living Donors/psychology , Organ Transplantation/statistics & numerical data
15.
Transpl Int ; 32(10): 1030-1043, 2019 Oct.
Article in English | MEDLINE | ID: mdl-31250484

ABSTRACT

Patients from ethnocultural minorities have reduced access to live donor kidney transplant (LDKT). To explore early pretransplant ethnocultural disparities in LDKT readiness, and the impact of the interactions with the transplant program, we assessed if patients had a potential live donor (LD) identified at first pretransplant assessment, and if patients with no LD initially received LDKT subsequently. Single-center, retrospective cohort of adults referred for kidney transplant (KT) assessment. Multivariable logistic regression assessed the association between ethnicity and having a potential LD. Cox proportional hazard analysis assessed the association between no potential LD initially and subsequent LDKT. Of 1617 participants, 66% of Caucasians indicated having a potential LD, compared with 55% of South Asians, 44% of African Canadians, and 41% of East Asians (P < 0.001). In multivariable logistic regression analysis, the odds of having a potential LD identified was significantly lower for African, East and South Asian Canadians. No potential LD at initial KT assessment was associated with lower likelihood of LDKT subsequently (hazard ratio [HR], 0.14; [0.10-0.19]). Compared to Caucasians, African, East and South Asian and African Canadians are less likely to have a potential LD identified at first KT assessment, which predicts a lower likelihood of subsequent LDKT.


Subject(s)
Kidney Transplantation/statistics & numerical data , Living Donors/statistics & numerical data , Racial Groups/statistics & numerical data , Adult , Aged , Female , Humans , Male , Middle Aged , Retrospective Studies
16.
BMC Nephrol ; 20(1): 78, 2019 03 04.
Article in English | MEDLINE | ID: mdl-30832619

ABSTRACT

BACKGROUND: Five-year survival on dialysis is only 40%, compared to 74% with a deceased donor kidney transplant (DDKT) and 87% with a living donor kidney transplant (LDKT). An American Society of Transplantation (AST) Consensus Conference recommended that patients with chronic kidney disease (CKD) Stages 3-5 have the opportunity to learn about and decide which treatment option is right for them, particularly about LDKT. However, early education about LDKT and DDKT outside of transplant centers is inconsistent and often poor, with patients in CKD 3 and 4 and ethnic/racial minorities even less likely to receive it. A new randomized control trial (RCT), in partnership with Kaiser Permanente Southern California (KPSC), will assess knowledge gaps and the effectiveness of a supplementary video-guided, print and technology-based education intervention for English- and Spanish-speaking patients in CKD Stages 3, 4, and 5 to increase LDKT knowledge and decision-making. To date, no published LDKT educational interventions have studied such a large and diverse CKD population. METHODS: In this RCT, 1200 English and Spanish-speaking CKD Stage 3-5 patients will be randomly assigned to one of two education conditions: ET@Home or KPSC standard of care education. Randomization will be stratified by CKD stage and primary language spoken. Those in the ET@Home condition will receive brochures, postcards, DVDs, and text messages delivering educational content in modules over a six-month period. Baseline data collection will measure demographics, transplant derailers, and the amount of previous CKD and transplant education they have received. Changes in CKD and transplant knowledge, ability to make an informed decision about transplant, and self-efficacy to pursue LDKT will be captured with surveys administered at baseline and at six months. DISCUSSION: At the conclusion of the study, investigators will understand key knowledge gaps for patients along the CKD continuum and between patients who speak different languages and have assessed the effectiveness of both English- and Spanish-language supplementary education in increasing KPSC patients' knowledge about the opportunities for and risks and benefits of LDKT. We hope this program will reduce disparities in access to transplant. TRIAL REGISTRATION: ClinicalTrials.gov Identifier: NCT03389932; date registered: 12/26/2017.


Subject(s)
Kidney Transplantation , Models, Educational , Patient Education as Topic/methods , Renal Insufficiency, Chronic/surgery , Educational Technology/methods , Health Knowledge, Attitudes, Practice , Humans , Kidney Transplantation/education , Kidney Transplantation/methods , Kidney Transplantation/psychology , Patient Acuity , Randomized Controlled Trials as Topic , Renal Insufficiency, Chronic/psychology , Tissue Donors/education , Tissue and Organ Procurement/methods
17.
BMC Nephrol ; 20(1): 416, 2019 11 20.
Article in English | MEDLINE | ID: mdl-31747918

ABSTRACT

BACKGROUND: Chronic kidney disease (CKD) is a global public health problem, exhibiting sharp increases in incidence, prevalence, and attributable morbidity and mortality. There is a critical need to better understand the demographics, clinical characteristics, and key risk factors for CKD; and to develop platforms for testing novel interventions to improve modifiable risk factors, particularly for the CKD patients with a rapid decline in kidney function. METHODS: We describe a novel collaboration between two large healthcare systems (Providence St. Joseph Health and University of California, Los Angeles Health) supported by leadership from both institutions, which was created to develop harmonized cohorts of patients with CKD or those at increased risk for CKD (hypertension/HTN, diabetes/DM, pre-diabetes) from electronic health record data. RESULTS: The combined repository of candidate records included more than 3.3 million patients with at least a single qualifying measure for CKD and/or at-risk for CKD. The CURE-CKD registry includes over 2.6 million patients with and/or at-risk for CKD identified by stricter guide-line based criteria using a combination of administrative encounter codes, physical examinations, laboratory values and medication use. Notably, data based on race/ethnicity and geography in part, will enable robust analyses to study traditionally disadvantaged or marginalized patients not typically included in clinical trials. DISCUSSION: CURE-CKD project is a unique multidisciplinary collaboration between nephrologists, endocrinologists, primary care physicians with health services research skills, health economists, and those with expertise in statistics, bio-informatics and machine learning. The CURE-CKD registry uses curated observations from real-world settings across two large healthcare systems and has great potential to provide important contributions for healthcare and for improving clinical outcomes in patients with and at-risk for CKD.


Subject(s)
Comprehensive Health Care , Electronic Health Records , Medical Record Linkage/methods , Renal Insufficiency, Chronic , Adult , Comprehensive Health Care/organization & administration , Comprehensive Health Care/standards , Diabetes Mellitus/epidemiology , Disease Progression , Electronic Health Records/organization & administration , Electronic Health Records/statistics & numerical data , Female , Humans , Hypertension/epidemiology , Male , Prevalence , Prognosis , Quality Improvement , Registries , Renal Insufficiency, Chronic/diagnosis , Renal Insufficiency, Chronic/epidemiology , Risk Assessment , Risk Factors , United States/epidemiology
18.
Health Commun ; 34(2): 259-267, 2019 02.
Article in English | MEDLINE | ID: mdl-29190124

ABSTRACT

This study seeks to characterize how non-directed living kidney donors use media and informational resources over the course of their kidney donation journey. We conducted semi-structured interviews with non-directed donors (NDDs) who initiated kidney transplant chains. Interview transcripts were reviewed and references to media or informational resources were classified by type and pattern of use. More than half (57%) of NDDs reported that an identifiable media or informational resource resulted in their initial interest in donation. Two-thirds (67%) of NDDs cited the influence of stories and personal narratives on their decision to donate. After transplant, media and informational resources were used to promote organ donation, connect with other donors or recipients, and reflect on donation. From the study's findings, we conclude that media and informational resources play an important role in the process of donation for NDDs, including inspiring interest in donation through personal narratives. Media sources provide emotionally and intellectually compelling discussions that motivate potential donors. The results of this study may facilitate the development of more targeted outreach to potential donors through use of personal narratives in articles and television programming about donation.


Subject(s)
Altruism , Living Donors , Mass Media , Motivation , Tissue and Organ Procurement , Decision Making , Female , Humans , Interviews as Topic , Kidney Transplantation , Male
19.
Am J Transplant ; 18(11): 2791-2797, 2018 11.
Article in English | MEDLINE | ID: mdl-30063811

ABSTRACT

One criticism of kidney paired donation (KPD) is that easy-to-match candidates leave the registry quickly, thus concentrating the pool with hard-to-match sensitized and blood type O candidates. We studied candidate/donor pairs who registered with the National Kidney Registry (NKR), the largest US KPD clearinghouse, from January 2012-June 2016. There were no changes in age, gender, BMI, race, ABO blood type, or panel-reactive antibody (PRA) of newly registering candidates over time, with consistent registration of hard-to-match candidates (59% type O and 38% PRA ≥97%). However, there was no accumulation of type O candidates over time, presumably due to increasing numbers of nondirected type O donors. Although there was an initial accumulation of candidates with PRA ≥97% (from 33% of the pool in 2012% to 43% in 2014, P = .03), the proportion decreased to 17% by June 2016 (P < .001). Some of this is explained by an increase in the proportion of candidates with PRA ≥97% who underwent a deceased donor kidney transplantation (DDKT) after the implementation of the Kidney Allocation System (KAS), from 8% of 2012 registrants to 17% of 2015 registrants (P = .02). In this large KPD clearinghouse, increasing participation of nondirected donors and the KAS have lessened the accumulation of hard-to-match candidates, but highly sensitized candidates remain hard-to-match.


Subject(s)
Donor Selection/organization & administration , Kidney Transplantation , Tissue Donors/supply & distribution , Tissue and Organ Procurement/organization & administration , Blood Grouping and Crossmatching , Female , Follow-Up Studies , Histocompatibility Testing , Humans , Male , Middle Aged , Multicenter Studies as Topic , Prognosis , Registries
20.
Am J Transplant ; 18(6): 1510-1517, 2018 06.
Article in English | MEDLINE | ID: mdl-29437286

ABSTRACT

Kidney paired donation (KPD) can facilitate living donor transplantation for candidates with an incompatible donor, but requires waiting for a match while experiencing the morbidity of dialysis. The balance between waiting for KPD vs desensitization or deceased donor transplantation relies on the ability to estimate KPD wait times. We studied donor/candidate pairs in the National Kidney Registry (NKR), a large multicenter KPD clearinghouse, between October 2011 and September 2015 using a competing-risk framework. Among 1894 candidates, 52% were male, median age was 50 years, 66% were white, 59% had blood type O, 42% had panel reactive antibody (PRA)>80, and 50% obtained KPD through NKR. Median times to KPD ranged from 2 months for candidates with ABO-A and PRA 0, to over a year for candidates with ABO-O or PRA 98+. Candidates with PRA 80-97 and 98+ were 23% (95% confidence interval , 6%-37%) and 83% (78%-87%) less likely to be matched than PRA 0 candidates. ABO-O candidates were 67% (61%-73%) less likely to be matched than ABO-A candidates. Candidates with ABO-B or ABO-O donors were 31% (10%-56%) and 118% (82%-162%) more likely to match than those with ABO-A donors. Providers should counsel candidates about realistic, individualized expectations for KPD, especially in the context of their alternative treatment options.


Subject(s)
Kidney Transplantation , Living Donors , Adult , Female , Histocompatibility Testing , Humans , Male , Middle Aged , Registries , Tissue and Organ Procurement
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