Recommendations for Systematizing Transplant Education Within a Care Delivery System for Patients With Chronic Kidney Disease Stages 3 to 5

Waterman, Amy D.; Lipsey, Amanda Faye; Ranasinghe, Omesh N; Wood, Emily H.; Anderson, Crystal S.; Bozzolo, Carla; Henry, Shayna L.; Dub, Bhanuja; Mittman, Brian

doi:10.1177/1526924820913520

Cited by 10 publications

(22 citation statements)

References 18 publications

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“…Concerns about pursuing kidney transplant included increased medication burden, fear of surgery, and fear of organ rejection [ 28 ]. Barriers to initiating transplant evaluation included confusion about diagnosis, lack of transplant knowledge, financial burdens, transportation, scheduling, emotional overload of chronic illness, medical mistrust, experiences with discrimination, and perceived racism [ 29 , 30 ]. Lack of knowledge about transplantation and insufficient patient-clinician communication were cited as persistent barriers to transplant, even in a setting of strong social support, high self-reported interest, and adequate insurance coverage [ 25 , 31 – 33 ].…”

Section: Resultsmentioning

confidence: 99%

A scoping review of inequities in access to organ transplant in the United States

Park

Jones

Kaplan

et al. 2022

Int J Equity Health

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Background Organ transplant is the preferred treatment for end-stage organ disease, yet the majority of patients with end-stage organ disease are never placed on the transplant waiting list. Limited access to the transplant waiting list combined with the scarcity of the organ pool result in over 100,000 deaths annually in the United States. Patients face unique barriers to referral and acceptance for organ transplant based on social determinants of health, and patients from disenfranchised groups suffer from disproportionately lower rates of transplantation. Our objective was to review the literature describing disparities in access to organ transplantation based on social determinants of health to integrate the existing knowledge and guide future research. Methods We conducted a scoping review of the literature reporting disparities in access to heart, lung, liver, pancreas and kidney transplantation based on social determinants of health (race, income, education, geography, insurance status, health literacy and engagement). Included studies were categorized based on steps along the transplant care continuum: referral for transplant, transplant evaluation and selection, living donor identification/evaluation, and waitlist outcomes. Results Our search generated 16,643 studies, of which 227 were included in our final review. Of these, 34 focused on disparities in referral for transplantation among patients with chronic organ disease, 82 on transplant selection processes, 50 on living donors, and 61 on waitlist management. In total, 15 studies involved the thoracic organs (heart, lung), 209 involved the abdominal organs (kidney, liver, pancreas), and three involved multiple organs. Racial and ethnic minorities, women, and patients in lower socioeconomic status groups were less likely to be referred, evaluated, and added to the waiting list for organ transplant. The quality of the data describing these disparities across the transplant literature was variable and overwhelmingly focused on kidney transplant. Conclusions This review contextualizes the quality of the data, identifies seminal work by organ, and reports gaps in the literature where future research on disparities in organ transplantation should focus. Future work should investigate the association of social determinants of health with access to the organ transplant waiting list, with a focus on prospective analyses that assess interventions to improve health equity.

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Section: Resultsmentioning

confidence: 99%

A scoping review of inequities in access to organ transplant in the United States

Park

Jones

Kaplan

et al. 2022

Int J Equity Health

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“…However, patients with CKD stage 3‐4 are not routinely educated regarding transplant, as nephrologists report that these patients are not interested in learning about it 78 . However, a recent study found that CKD 3‐4 patients are very interested in learning about transplantation 79 . A recent survey of dialysis patients found that the reason most patients were not evaluated for transplant was the patient did not know how to proceed or did not understand the benefits of transplant or transplant process 33 .…”

Section: Physician/provider Relatedmentioning

confidence: 99%

“…78 However, a recent study found that CKD 3-4 patients are very interested in learning about transplantation. 79 A recent survey of dialysis patients found that the reason most patients were not evaluated for transplant was the patient did not know how to proceed or did not understand the benefits of transplant or transplant process. 33 Additionally, blacks and Hispanics were less likely to understand the benefits or transplant process compared to whites.…”

Section: Patient-physician Communicationmentioning

confidence: 99%

Barriers to kidney transplantation in ESKD

Venkataraman

Kendrick

2020

Seminars in Dialysis

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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.

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“…Providing education to potential kidney transplant (KTX) candidates prior to the initial transplant evaluation visit can support patients' information needs and increase their pursuit of transplantation. 1,2 Group classes at transplant centers were a common approach prior to March 2020. The pandemic created an urgent need for a remote approach for providing transplant education.…”

Section: Introductionmentioning

confidence: 99%

Feasibility of providing web‐based education to patients prior to kidney transplant evaluation

Kayler,

Nie,

Solbu

et al. 2023

Clinical Transplantation

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BackgroundWe previously developed web‐based education to be used by patients prior to kidney transplant (KTX) evaluation. The current feasibility study evaluated patients’ intervention uptake and barriers, and staff experiences of the clinic‐wide implementation in preparation for a definitive comparative effectiveness trial.MethodsWeb links and login instructions to view 17 educational videos designed to promote KTX access were delivered via email or text to adults referred to a single transplant center between 10/2020 and 3/2021. Patient barriers were recorded. Non‐completers were allowed to view the resources in the clinic. N = 7 clinic staff were interviewed about their experiences of in‐clinic delivery of the web‐education. Interviews were recorded with field notes and coded using simple content analysis. Patient characteristics and 30‐month KTX access were examined with Chi‐square, t‐tests, and log‐rank tests.ResultsOf 210 patients, 71% completed the self‐education remotely (completers), 16% attempted but did not complete remotely (attempters), and 13% declined the web link invitation (decliners). Implementation barriers included technology access and use difficulties, unstable internet connectivity, limited staff time in clinic to facilitate technology use by patients, and limited technology attentiveness by patients in clinic. In 3‐group comparisons, remote decliners were older with worse estimated posttransplant survival scores, and attempters were younger, more often Medicaid insured, and lived in higher area deprivation; both were more often deemed ineligible for KTX than completers. Between‐group time‐to‐transplantation was non‐significant (p = .571).ConclusionThe majority of patients accessed the web‐education remotely; however, more vulnerable demographic populations reported greater problems accessing web‐education. In‐clinic delivery was burdensome to staff and patients. Future adaptive implementation strategies are needed to allow for adequate patient education.

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Recommendations for Systematizing Transplant Education Within a Care Delivery System for Patients With Chronic Kidney Disease Stages 3 to 5

Cited by 10 publications

References 18 publications

A scoping review of inequities in access to organ transplant in the United States

A scoping review of inequities in access to organ transplant in the United States

Barriers to kidney transplantation in ESKD

Feasibility of providing web‐based education to patients prior to kidney transplant evaluation

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