Ethnicity-Specific Differences in Liver Transplant Outcomes Among Adults With Primary Sclerosing Cholangitis: 2005–2017 United Network for Organ Sharing/Organ Procurement and Transplantation Network

Bayable, Asnakech; Ohabughiro, Michael U.; Cheung, Ramsey; Wong, Robert J.

doi:10.1016/j.jceh.2020.06.004

Cited by 6 publications

(5 citation statements)

References 19 publications

(26 reference statements)

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“…However, rates of PSC-related comorbidities in our study, including autoimmune hepatitis overlap and IBD, were consistent with the reported literature, 10 supporting population validity. Furthermore, though there was a high percentage of non-Latino White patients, this proportion was consistent with a large cohort of adults with PSC, 26 suggesting that the diversity initiative undertaken by PSC Partners for enrollment was reasonably successful. Recall and nonresponse biases are always possible in survey-based studies, though our analyses focused on active symptoms at the time of survey completion, and there were minimal (<1%) missing data for any given survey question, suggesting that these biases were limited in our study.…”

Section: Discussionsupporting

confidence: 61%

Patient-focused drug development in primary sclerosing cholangitis: Insights on patient priorities and involvement in clinical trials

Li,

Pai,

Gomel

et al. 2024

Hepatology Communications

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Background: According to the new AASLD Practice Guidance, all patients with primary sclerosing cholangitis (PSC) should be considered for participation in clinical trials. However, PSC’s rarity has posed challenges to characterizing patient interest in trial participation and identifying predictors of patient willingness to participate in drug trials. Methods: PSC Partners Seeking a Cure developed the “Our Voices” survey to inform the development of the Externally-Led Patient-Focused Drug Development Forum, an FDA initiative to capture patient experiences and perspectives on drug development. Results: Of 797 survey respondents from over 30 countries, 536 (67%) identified slowing disease progression as the most important outcome. Eighty-nine percent identified their hepatologist/gastroenterologist as someone they would approach for advice about trials. Although 61% reported being willing to participate in drug trials, only 26% had ever been asked to participate. Notable barriers to trial involvement included unknown long-term risks (71%), long travel times to the study center (32%), and a liver biopsy requirement (27%). On multivariable logistic regression, pruritus (OR 1.62, 95% CI: 1.09–2.40, p = 0.017) was positively associated with willingness to participate in disease-modifying therapy trials, while jaundice (OR 0.34, 95% CI: 0.19–0.61, p < 0.001) and inflammatory bowel disease (OR 0.64, 95% CI: 0.42–0.98, p = 0.038) were negatively associated. Pruritus (OR 2.25, 95% CI: 1.50–3.39, p < 0.001) was also independently associated with willingness to participate in symptom treatment trials. Conclusions: Most patients with PSC report interest in participating in clinical trials, but few have been asked to participate. Referral of patients with PSC by their hepatologist/gastroenterologist to clinical trials and patient education on trial participation are vital to closing the gap between trial interest and participation. Pruritus may serve as a key indicator of patient interest in trial participation.

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Section: Discussionsupporting

confidence: 61%

Patient-focused drug development in primary sclerosing cholangitis: Insights on patient priorities and involvement in clinical trials

Li,

Pai,

Gomel

et al. 2024

Hepatology Communications

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“…A study from UNOS of adults waitlisted with PSC but without HCC from 2005 to 2017 found that Hispanics had a lower probability of receiving LT compared to White persons (HR, 0.73; 95% CI, 0.54-0.98), even after controlling for insurance status. [115] Minority patients with cholestatic liver diseases, including Black, Hispanic, and Asian, were also less likely to receive living donor LTs (LDLTs) compared to White patients, [116] potentially related to fewer liver organ donation inquiries in these groups. [116] LDLT recipients were more likely to have private health insurance and less likely to reside in areas of high poverty.…”

Section: Access To Carementioning

confidence: 99%

Health disparities in chronic liver disease

et al. 2022

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The syndemic of hazardous alcohol consumption, opioid use, and obesity has led to important changes in liver disease epidemiology that have exacerbated health disparities. Health disparities occur when plausibly avoidable health differences are experienced by socially disadvantaged populations. Highlighting health disparities, their sources, and consequences in chronic liver disease is fundamental to improving liver health outcomes.There have been large increases in alcohol use disorder in women, racial and ethnic minorities, and those experiencing poverty in the context of poor access to alcohol treatment, leading to increasing rates of alcoholassociated liver diseases. Rising rates of NAFLD and associated fibrosis have been observed in Hispanic persons, women aged > 50, and individuals experiencing food insecurity. Access to viral hepatitis screening and linkage to treatment are suboptimal for racial and ethnic minorities and individuals who are uninsured or underinsured, resulting in greater liver-related mortality and later-stage diagnoses of HCC. Data from more diverse cohorts on autoimmune and cholestatic liver diseases are lacking, supporting the need to study the contemporary epidemiology of these disorders in greater detail.Herein, we review the existing literature on racial and ethnic, gender, and socioeconomic disparities in chronic liver diseases using a social determinants of health framework to better understand how social and structural factors cause health disparities and affect chronic liver disease outcomes. We also propose potential solutions to eliminate disparities, outlining healthpolicy, health-system, community, and individual solutions to promote equity and improve health outcomes.

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“…Inferior post-LT outcomes such as increased risk of renal complications and long-term mortality have long been associated with Black LT recipients [11 ▪ ,19,20]. Contemporary studies largely reinforce these findings, with focus on HCC, primary sclerosing cholangitis and primary biliary cholangitis [5,21,22]. Lee et al [23] in a retrospective analysis of UNOS registry found a higher probability of age-adjusted mortality and risk of mortality in Black patients when compared to White patients; ALD was one of the strongest identified mediators of the observed racial disparities.…”

Section: Inequities In Post Liver Transplantation Outcomesmentioning

confidence: 97%

Equity in liver transplantation: are we any closer?

Ogundolie,

Chan,

McElroy

2023

Current Opinion in Organ Transplantation

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Purpose of review As policies governing liver transplantation (LT) continue to change and influence clinical practice, it is important to monitor trends in equitable access and outcomes amongst patients. The purpose of this review is to closely examine recent advances and findings in health equity research in LT over the last 2 years; specifically evaluating inequities at the different stages of LT (referral, evaluation, listing, waitlist outcomes and post-LT outcomes). Recent findings Advancements in geospatial analysis have enabled investigators to identify and begin to study the role of community level factors (such as neighborhood poverty, increased community capital/urbanicity score) in driving LT disparities. There has also been a shift in investigating center specific characteristics that contributes to disparities in waitlist access. Modification to the current model for end stage liver disease (MELD) score policy accounting for height differences is also crucial to eradicating the disparity in LT amongst sexes. Lastly, Black pediatric patients have been shown to have higher rates of death and worse posttransplant outcome after transitioning to adult healthcare. Summary Although, there have been some advances in methodology and policies, inequities in waitlist access, waitlist outcomes and posttransplant outcomes continue to be pervasive in the field of LT. Future directions include expansion of social determinants of health measures, inclusion of multicenter designs, MELD score modification and investigation into drivers of worse posttransplant outcomes in Black patients.

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Ethnicity-Specific Differences in Liver Transplant Outcomes Among Adults With Primary Sclerosing Cholangitis: 2005–2017 United Network for Organ Sharing/Organ Procurement and Transplantation Network

Cited by 6 publications

References 19 publications

Patient-focused drug development in primary sclerosing cholangitis: Insights on patient priorities and involvement in clinical trials

Patient-focused drug development in primary sclerosing cholangitis: Insights on patient priorities and involvement in clinical trials

Health disparities in chronic liver disease

Equity in liver transplantation: are we any closer?

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