Transplant Nephrologists' Preferences for Clinical Decision Support for APOL1 Genetic Testing of Living Kidney Donors: A Focus Group Study.
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ABSTRACT:
SUBMITTER: Rasmussen LV
PROVIDER: S-EPMC10695637 | biostudies-literature | 2023 Nov
REPOSITORIES: biostudies-literature
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Transplant Nephrologists' Preferences for Clinical Decision Support for APOL1 Genetic Testing of Living Kidney Donors: A Focus Group Study.
Rasmussen Luke V LV Agrawal Akansha H AH Gordon Elisa J EJ
Kidney360 20231012 11
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Project description:It is unknown how providing prospective living donors with information about APOL1, including the benefits and drawbacks of testing, influences their desire for testing. In this study, we surveyed 102 participants with self-reported African ancestry and positive family history of kidney disease, recruited from our nephrology waiting room. We assessed views on APOL1 testing before and after presentation of a set of potential benefits and drawbacks of testing and quantified the self-reported level of influence individual benefits and drawbacks had on participants' desire for testing in the proposed context of living donation. The majority of participants (92%) were aware of organ donation and more than half (56%) had considered living donation. And though we found no significant change in response following presentation of the potential benefits and the drawbacks of APOL1 testing by study end significance, across all participants, "becoming aware of the potential risk of kidney disease among your immediate family" was the benefit with the highest mean influence (3.3±1.4), while the drawback with the highest mean influence (2.9±1.5) was "some transplant centers may not allow you to donate to a loved one". This study provides insights into the priorities of prospective living donors and suggests concern for how the information affects family members may strongly influence desires for testing. It also highlights the need for greater community engagement to gain a deeper understanding of the priorities that influence decision making on APOL1 testing.
| S-EPMC9113661 | biostudies-literature
Project description:Rationale & objectiveAfrican American live kidney donors ("donors") have a greater risk for kidney failure than European American donors. Apolipoprotein L1 gene (APOL1) variants in African Americans may be associated with this disparity.Study designCross-sectional mixed-methods design.Setting & participantsAfrican American donors at 1 transplantation center.Analytical approachSemistructured interviews assessed attitudes about APOL1 genetic testing, willingness to undergo APOL1 testing, hypothetical decisions about donating with 2 APOL1 variants, and demographics. Surveys assessed perceptions of ethnic identity and genetics knowledge. Interview transcriptions were analyzed using thematic analysis. Survey data were analyzed using descriptive statistics.Results23 donors participated in semistructured interviews. Most (96%) reported that transplantation centers should routinely offer APOL1 genetic testing to all African American potential donors. Most (87%) would have been willing to undergo APOL1 testing before donating. Although study participants noted that APOL1 testing may deter African American potential donors from donating, most (61%) would have donated even if they had 2 high-risk APOL1 variants. Several themes emerged. Study participants believed that APOL1 testing was beneficial for providing information to help donors make informed donation decisions. Participants expressed concern about APOL1 variants placing donors at harm for kidney failure, and therefore valued taking preventive health measures. Participants believed that potential donors would experience psychological distress from learning that they have 2 gene variants and could harm their recipients. Participants were apprehensive about insurance coverage and costs of APOL1 testing and feared that APOL1 genetic test results could discriminate against African Americans.LimitationsFindings may not be generalizable to African American potential donors.ConclusionsFindings suggest that African American donors support APOL1 genetic testing yet fear that APOL1 variants and genetic testing could adversely affect donors' health and ethnic identity. Transplantation centers using APOL1 genetic testing should address African American donors' concerns about APOL1 genetic testing to optimize future donors' informed consent practices.
| S-EPMC6252162 | biostudies-literature
Project description:Black living kidney donors are at higher risk of developing kidney disease than white donors. We examined the effect of the APOL1 high-risk genotype on postdonation renal function in black living kidney donors and evaluated whether this genotype alters the association between donation and donor outcome. We grouped 136 black living kidney donors as APOL1 high-risk (two risk alleles; n=19; 14%) or low-risk (one or zero risk alleles; n=117; 86%) genotype. Predonation characteristics were similar between groups, except for lower mean±SD baseline eGFR (CKD-EPI equation) in donors with the APOL1 high-risk genotype (98±17 versus 108±20 ml/min per 1.73 m2; P=0.04). At a median of 12 years after donation, donors with the APOL1 high-risk genotype had lower eGFR (57±18 versus 67±15 ml/min per 1.73 m2; P=0.02) and faster decline in eGFR after adjusting for predonation eGFR (1.19; 95% confidence interval, 0 to 2.3 versus 0.4; 95% confidence interval, 0.1 to 0.7 ml/min per 1.73 m2 per year, P=0.02). Two donors developed ESRD; both carried the APOL1 high-risk genotype. In a subgroup of 115 donors matched to 115 nondonors by APOL1 genotype, we did not find a difference between groups in the rate of eGFR decline (P=0.39) or any statistical interaction by APOL1 status (P=0.92). In conclusion, APOL1 high-risk genotype in black living kidney donors associated with greater decline in postdonation kidney function. Trajectory of renal function was similar between donors and nondonors. The association between APOL1 high-risk genotype and poor renal outcomes in kidney donors requires validation in a larger study.
| S-EPMC5875947 | biostudies-literature
Project description:The Organ Procurement and Transplantation Network gives priority in kidney allocation to prior live organ donors who require a kidney transplant. In this study, we analyzed the effect of this policy on facilitating access to transplantation for prior donors who were wait-listed for kidney transplantation in the United States. Using 1:1 propensity score-matching methods, we assembled two matched cohorts. The first cohort consisted of prior organ donors and matched nondonors who were wait-listed during the years 1996-2010. The second cohort consisted of prior organ donors and matched nondonors who underwent deceased donor kidney transplantation. During the study period, there were 385,498 listings for kidney transplantation, 252 of which were prior donors. Most prior donors required dialysis by the time of listing (64% versus 69% among matched candidates; P=0.24). Compared with matched nondonors, prior donors had a higher rate of deceased donor transplant (85% versus 33%; P<0.001) and a lower median time to transplantation (145 versus 1607 days; P<0.001). Prior donors received higher-quality allografts (median kidney donor risk index 0.67 versus 0.90 for nondonors; P<0.001) and experienced lower post-transplant mortality (hazard ratio, 0.19; 95% confidence interval, 0.08 to 0.46; P<0.001) than matched nondonors. In conclusion, these data suggest that prior organ donors experience brief waiting time for kidney transplant and receive excellent-quality kidneys, but most need pretransplant dialysis. Individuals who are considering live organ donation should be provided with this information because this allocation priority will remain in place under the new US kidney allocation system.
| S-EPMC4413763 | biostudies-literature
Project description:BACKGROUND:The decision to become a living liver donor is a stressful event. Ambivalence in decision making may result in psychological distress. Thus, the purpose of this study was to provide a description of the ambivalence of potential living liver donors, to examine the predictors of ambivalence, and to compare the ambivalence of potential living liver donors with that of actual living liver donors. METHODS:This descriptive and correlational study was conducted in a medical center from August 2013 to December 2015. Self-reported questionnaires were used to collect data. A total of 263 potential living liver donors who were assessed for donation to their parents were included in this study. RESULTS:The mean age of the total sample was 30.7 years (SD = 6.39, range = 20-47), and males comprised 53.6% of the sample. The majority of the potential donors had a college education (70.8%) and were single (63.5%). Of the total sample, the mean score for ambivalence was 4.27 (SD = 1.87, range = 0-7). Multivariate analysis revealed that the Mental Component Summary (MCS) of quality of life (β = -0.24, p < 0.01), family support (β = -0.17, p = 0.007), and intimacy (β = -0.13, p = 0.04) were significant protective predictors of ambivalence. Actual living liver donors had significantly lower ambivalence (3.82 versus 4.60), higher intimacy with recipients (3.55 versus 3.34), higher MCS (45.26 versus 42.80), and higher family support (34.39 versus 29.79) than did the remaining potential living liver donors. CONCLUSION:Ambivalence is common in potential living liver donors. The MCS of quality of life, family support, and intimacy were protective predictors in terms of ambivalence. Future research should explore other factors and design interventions targeted toward reducing ambivalence, promoting family support, and enhancing the mental dimensions of quality of life in potential living liver donors.
| S-EPMC5435180 | biostudies-literature
Project description:Laboratory test overutilization increases health care costs, leads to unwarranted investigations, and may have a negative impact on health outcomes. The American Society of Clinical Pathology, in its Choosing Wisely Campaign, advocates that inflammation be investigated with C-reactive protein (CRP) instead of Erythrocyte Sedimentation Rate (ESR). London Health Sciences Centre (LHSC), a tertiary care hospital organization in Ontario, Canada, set a goal to reduce inappropriate ESR orders by 50%. After developing appropriateness criteria for ESR, we used a series of PDSA cycles to reduce inappropriate ESR ordering and analyzed our results with an interrupted time series design. Our intervention began with an educational bulletin and moved to city-wide implementation of computerized Clinical Decision Support (CDS). After implementation, ESR orders decreased by 40% from 386 orders per week to 241 orders per week. Our results are supported by previous literature on the effectiveness of CDS in reducing overutilization and suggest that provider habit is a significant contributor to inappropriate ordering.
| S-EPMC4822023 | biostudies-other
Project description:IntroductionMany studies of Black-White disparities in living donor kidney transplantation hypothesize that they were partially due to Black-White differences in candidate social network access to healthy, willing donors. This differential access hypothesis has not been tested using directly measured social network data.Research questionsDo black kidney transplant candidates have perceived lower social network access to health and/or willing living donors than white candidates?DesignA cross-sectional survey that measured the social network members was collected in 2015. Black-White differences in patient counts of perceived healthy and/or willing potential donors in social networks, and individual network members' probability of being perceived healthy and/or willing, were compared using logistic and negative binomial regression models.ResultsThe survey included 66 kidney transplant candidates reporting on 1474 social network members at a large Southeastern US transplant center in 2015. Black and White patients had similar access to perceived healthy, likely potential donors (86% vs 87% had 1 or more, P = .92; 5.91 vs 4.13 mean counts, P = .20) and perceived healthy, agreed potential donors (56% vs 48%, P = .54; 1.77 vs 1.74, P = .97). Black patients' network members were individually more likely to be perceived healthy and likely potential donors (26% vs 21%, P = .04), and White patients' network members were more likely to have agreed (13% vs 9%, P = .03), but these differences were statistically insignificant in demographically adjusted models.ConclusionBlack and White transplant candidates perceived access to similar numbers of potential donors in their social networks. This result does not support the differential access hypothesis.
| S-EPMC10150261 | biostudies-literature
Project description:Background and objectivesThe unmet demand for kidney transplantation has generated intense controversy about introducing incentives for living kidney donors to increase donation rates. Such debates may affect public perception and acceptance of living kidney donation. This study aims to describe the range and depth of public opinion on financial reimbursement, compensation, and incentives for living kidney donors.Design, setting, participants, & measurementsTwelve focus groups were conducted with 113 participants recruited from the general public in three Australian states in February 2013. Thematic analysis was used to analyze the transcripts.ResultsFive themes were identified: creating ethical impasses (commodification of the body, quandary of kidney valuation, pushing moral boundaries), corrupting motivations (exposing the vulnerable, inevitable abuse, supplanting altruism), determining justifiable risk (compromising kidney quality, undue harm, accepting a confined risk, trusting protective mechanisms, right to autonomy), driving access (urgency of organ shortage, minimizing disadvantage, guaranteeing cost-efficiency, providing impetus, counteracting black markets), and honoring donor deservingness (fairness and reason, reassurance and rewards, merited recompense). Reimbursement and justifiable recompense are considered by the Australian public as a legitimate way of supporting donors and reducing disadvantage. Financial payment beyond reimbursement is regarded as morally reprehensible, with the potential for exploitative commercialism. Some contend that regulated compensation could be a defensible strategy to increased donation rates provided that mechanisms are in place to protect donors.ConclusionsThe perceived threat to community values of human dignity, goodwill, and fairness suggests that there could be strong public resistance to any form of financial inducements for living kidney donors. Policy priorities addressing the removal of disincentives may be more acceptable to the public.
| S-EPMC4491296 | biostudies-literature
Project description:BackgroundSystems aiding in selecting the correct settings for mechanical ventilation should visualize patient information at an appropriate level of complexity, so as to reduce information overload and to make reasoning behind advice transparent. Metaphor graphics have been applied to this effect, but these have largely been used to display diagnostic and physiologic information, rather than the clinical decision at hand. This paper describes how the conflicting goals of mechanical ventilation can be visualized and applied in making decisions. Data from previous studies are analyzed to assess whether visual patterns exist which may be of use to the clinical decision maker.Materials and methodsThe structure and screen visualizations of a commercial clinical decision support system (CDSS) are described, including the visualization of the conflicting goals of mechanical ventilation represented as a hexagon. Retrospective analysis is performed on 95 patients from 2 previous clinical studies applying the CDSS, to identify repeated patterns of hexagon symbols.ResultsVisual patterns were identified describing optimal ventilation, over and under ventilation and pressure support, and over oxygenation, with these patterns identified for both control and support modes of mechanical ventilation. Numerous clinical examples are presented for these patterns illustrating their potential interpretation at the bedside.ConclusionsVisual patterns can be identified which describe the trade-offs required in mechanical ventilation. These may have potential to reduce information overload and help in simple and rapid identification of sub-optimal settings.
| S-EPMC8785460 | biostudies-literature
Project description:α-Klotho is a known anti-aging protein that exerts diverse physiological effects, including phosphate homeostasis. Klotho expression occurs predominantly in the kidney and is significantly decreased in patients with chronic kidney disease. However, changes in serum klotho levels and impacts of klotho on outcomes among kidney transplant (KTx) recipients and kidney donors remain unclear. A literature search was conducted using MEDLINE, EMBASE, and Cochrane Database from inception through October 2019 to identify studies evaluating serum klotho levels and impacts of klotho on outcomes among KTx recipients and kidney donors. Study results were pooled and analyzed utilizing a random-effects model. Ten cohort studies with a total of 431 KTx recipients and 5 cohort studies with a total of 108 living kidney donors and were identified. After KTx, recipients had a significant increase in serum klotho levels (at 4 to 13 months post-KTx) with a mean difference (MD) of 243.11 pg/mL (three studies; 95% CI 67.41 to 418.81 pg/mL). Although KTx recipients had a lower serum klotho level with a MD of = -234.50 pg/mL (five studies; 95% CI -444.84 to -24.16 pg/mL) compared to healthy unmatched volunteers, one study demonstrated comparable klotho levels between KTx recipients and eGFR-matched controls. Among kidney donors, there was a significant decrease in serum klotho levels post-nephrectomy (day 3 to day 5) with a mean difference (MD) of -232.24 pg/mL (three studies; 95% CI -299.41 to -165.07 pg/mL). At one year following kidney donation, serum klotho levels remained lower than baseline before nephrectomy with a MD of = -110.80 pg/mL (two studies; 95% CI 166.35 to 55.24 pg/mL). Compared to healthy volunteers, living kidney donors had lower serum klotho levels with a MD of = -92.41 pg/mL (two studies; 95% CI -180.53 to -4.29 pg/mL). There is a significant reduction in serum klotho levels after living kidney donation and an increase in serum klotho levels after KTx. Future prospective studies are needed to assess the impact of changes in klotho on clinical outcomes in KTx recipients and living kidney donors.
| S-EPMC7355868 | biostudies-literature