A Culturally Sensitive Web-based Intervention to Improve Living Donor Kidney Transplant Among African Americans

Patzer, Rachel E.; McPherson, Laura; Redmond, Nakeva; DuBay, Derek A.; Zayas, Carlos; Hartmann, Erika; Mulloy, Laura L.; Perryman, Jennie P.; Pastan, Stephen O.; Arriola, Kimberly Jacob

doi:10.1016/j.ekir.2019.05.771

Cited by 30 publications

(30 citation statements)

References 35 publications

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“…A multicenter randomized controlled trial tested the effectiveness of a revised Living ACTS (About Choices in Transplantation and Sharing) intervention to increase knowledge of LDKT and willingness to discuss LDKT with family members. The web-based intervention Living ACTS was developed for Black patients with kidney disease and included five educational modules: Introduction, Benefits and Risks, The Kidney Transplant Process, Identifying a Potential Kidney Donor, and ACT Now (which encourages communication with friends and family about transplantation) [ 124 ]. Intervention participants demonstrated a significantly greater increase in knowledge of LDKT and greater willingness to talk to their families about LDKT than did control participants.…”

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

107

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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

107

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“…[2,[9][10][11] Additionally, some didactic education programs take a one-size-fits-all approach and fail to tailor information to honor variation in readiness of patients managing the same health condition [12][13][14][15][16][17] or cultural norms and languages of specific racial/ethnic patient groups. [18][19][20][21][22][23] First-person storytelling (FPS), or narratives shared by individuals in their own words, may address some of the limitations of traditional didactic learning approaches. [2] Patients sharing personal stories about their own health can educate, motivate, and reduce fears of others who are similar to them.…”

Section: Introductionmentioning

confidence: 99%

Evaluation of first-person storytelling on changing health-related attitudes, knowledge, behaviors, and outcomes: A scoping review

Lipsey

Waterman

Wood

et al. 2020

Patient Education and Counseling

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Objectives: First-person storytelling (FPS) has the potential to engage patients in changing behavior differently than didactic education. We assessed the prevalence of FPS in health education interventions; whether published FPS research has shown improvements in attitudinal, knowledge, behavioral, or clinical outcomes; and whether randomized controlled trials (RCTs) including FPS have shown more effectiveness than non-FPS interventions. Methods: A scoping review of FPS studies published before October 2019 in five medical databases was conducted. Results: 22 out of 10,363 identified studies met eligibility criteria. FPS has been studied primarily in cancer, diabetes, and hypertension. Of the 12 RCTs, compared to controls, patients receiving FPS interventions improved attitudes (N=6 studies) and knowledge (N=1), improved health behaviors like quitting smoking (N=6), and improved clinical outcomes like lowering A1C levels (N=3). Of the 10 non-RCT studies, compared to baseline assessments, patients who received FPS interventions had improved knowledge (N=1), attitudes (N=3), clinical outcomes (N=4), and improved health behaviors (N=7). Conclusion: While rarely used, FPS interventions can improve patient health attitudes and outcomes. Future research should expand FPS to new health areas and determine best practices for developing FPS interventions. Practice Implications: FPS may be particularly effective with low income patients and racial/ethnic minorities.

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“…At the provider and system level, research has found that transplant facilities with specifically tailored toolkits to coordinate patient care, 46,47 and risk‐based approaches identifying patients in need of targeted care 48,49 were more successful. Interventions including multiple levels of the socioecological model may be needed, perhaps in combination 50‐52 …”

Section: Discussionmentioning

confidence: 99%

Your Path to Transplant: A randomized controlled trial of a tailored expert system intervention to increase knowledge, attitudes, and pursuit of kidney transplant

Waterman

Peipert

Cui

et al. 2021

American Journal of Transplantation

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Individually tailoring education over time may help more patients, especially racial/ethnic minorities, get wait-listed and pursue deceased and living donor kidney transplant (DDKT and LDKT, respectively). We enrolled 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 four 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 = 0.003) and transplant knowledge (effect size [ES]=0.41, p<0.001). Transplant pursuit was higher in the YPT group (HR: 1.44, 95% CI: 1.15-1.79, p = 0.002). A focused, coordinated education effort can improve transplant-seeking behaviors and wait-listing rates. ClinicalTrials.gov registration: NCT02181114

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A Culturally Sensitive Web-based Intervention to Improve Living Donor Kidney Transplant Among African Americans

Cited by 30 publications

References 35 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

Evaluation of first-person storytelling on changing health-related attitudes, knowledge, behaviors, and outcomes: A scoping review

Your Path to Transplant: A randomized controlled trial of a tailored expert system intervention to increase knowledge, attitudes, and pursuit of kidney transplant

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