The Other Half of Informed Consent

Kucirka, Lauren M.; Segev, Dorry L.

doi:10.2215/cjn.08280815

Cited by 4 publications

(4 citation statements)

References 24 publications

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“…This study has several limitations. First, given the availability of the data, it was not possible to determine the differences between profit status and chain affiliations regarding staffing resources, education policies, and transplant referral practices, all of which may be associated with increased access to kidney transplantation.…”

Section: Discussionmentioning

confidence: 99%

Association Between Dialysis Facility Ownership and Access to Kidney Transplantation

Gander

Zhang

Ross

et al. 2019

JAMA

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

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Section: Discussionmentioning

confidence: 99%

Association Between Dialysis Facility Ownership and Access to Kidney Transplantation

Gander

Zhang

Ross

et al. 2019

JAMA

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“…23 It is well established that minority groups such as African Americans and Hispanics experience significantly lower access to transplantation, which, among other things, has been attributed to disparities in their transplant knowledge and in the quality of transplant education they receive. 24 - 27 …”

Section: Introductionmentioning

confidence: 99%

Explore Transplant Ontario: Adapting the Explore Transplant Education Program to Facilitate Informed Decision Making About Kidney Transplantation

Mucsi

Novák

Toews

et al. 2018

Can J Kidney Health Dis

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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.

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“…Additionally, there is evidence that alternative dialysis options may improve patients' survival and HRQOL (10). It has been argued recently that, when patients on dialysis are not given access to information about the risks and benefits of all their treatment options, they cannot make informed consent for their dialysis treatment (13). We contend that patient reports of receiving information about their treatment options may be better indicators of whether informed decision making and consent around treatment choices actually occur among patients on dialysis compared with provider reports.…”

Section: Recommendationmentioning

confidence: 91%

Using Patient-Reported Measures in Dialysis Clinics

Peipert¹

2017

CJASN

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The Other Half of Informed Consent

Cited by 4 publications

References 24 publications

Association Between Dialysis Facility Ownership and Access to Kidney Transplantation

Association Between Dialysis Facility Ownership and Access to Kidney Transplantation

Explore Transplant Ontario: Adapting the Explore Transplant Education Program to Facilitate Informed Decision Making About Kidney Transplantation

Using Patient-Reported Measures in Dialysis Clinics

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