Center variation in long-term outcomes for socioeconomically deprived children

Wadhwani, Sharad I.; Huang, Chiung‐Yu; Gottlieb, Laura M.; Beck, Andrew F.; Bucuvalas, John C.; Kotagal, Uma R.; Lyles, Courtney R.; Lai, Jennifer C.

doi:10.1111/ajt.16529

Cited by 20 publications

(36 citation statements)

References 31 publications

(80 reference statements)

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“…High‐performing pediatric liver transplantation centers were able to achieve good long‐term posttransplant outcomes despite caring for predominately socioeconomically deprived children. [ 32 ] This study demonstrated that although socioeconomic deprivation is a risk factor for adverse outcomes, there may be transplant‐center practices that mitigate the risks of socioeconomic deprivation. In addition to socioeconomic deprivation, insurance has additionally been used as a proxy for socioeconomic status.…”

Section: Socioeconomic Disparitiesmentioning

confidence: 95%

“…This would allow for national benchmarking with the ability to compare and identify high‐performing centers. [ 32 ] Moreover, pediatric transplant societies should highlight high‐performing centers, amplified through learning networks such as the Starzl Network and quality improvement initiatives such as through SPLIT to rapidly identify strategies for achieving health equity for all children requiring liver transplantation.…”

Section: Addressing Disparities In Pediatric Liver Transplantationmentioning

confidence: 99%

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A review of racial, socioeconomic, and geographic disparities in pediatric liver transplantation

Ebel

Lai

Bucuvalas

et al. 2022

Liver Transplantation

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Equity is a core principle in both pediatrics and solid organ transplantation. Health inequities, specifically across race, socioeconomic position, or geography, reflect a moral failure. Ethical principles of prudential life span, maximin principle, and fair innings argue for allocation priority to children related to the number of life years gained, equal access to transplant, and equal opportunity for ideal posttransplant outcomes. Iterative policy changes have aimed to narrow these disparities to achieve pediatric transplant equity. These policy changes have focused on modifying pediatric priority for organ allocation to eliminate mortality on the pediatric transplant waiting list. Yet disparities remain in pediatric liver transplantation at all time points: from access to referral for transplantation, likelihood of living donor transplantation, use of exception narratives, waitlist mortality, and inequitable posttransplant outcomes. Black children are less likely to be petitioned for exception scores, have higher waitlist mortality, are less likely to be the recipient of a living donor transplant, and have worse posttransplant outcomes compared with White children. Children living in the most socioeconomically deprived neighborhoods have worse posttransplant outcomes. Children living farther from a transplant center have higher waitlist mortality. Herein we review the current knowledge of these racial and ethnic, socioeconomic, and geographic disparities for these children. To achieve equity, stakeholder engagement is required at all levels from providers and health delivery systems, learning networks, institutions, and society. Future initiatives must be swift, bold, and effective with the tripartite mission to inform policy changes, improve health care delivery, and optimize resource allocation to provide equitable transplant access, waitlist survival, and posttransplant outcomes for all children.

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Section: Socioeconomic Disparitiesmentioning

confidence: 95%

Section: Addressing Disparities In Pediatric Liver Transplantationmentioning

confidence: 99%

A review of racial, socioeconomic, and geographic disparities in pediatric liver transplantation

Ebel

Lai

Bucuvalas

et al. 2022

Liver Transplantation

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“…[ 4 ] We and others have described racial and socioeconomic disparities in long‐term outcomes, with Black children and children from socioeconomically deprived neighborhoods having increased risk of adverse long‐term outcomes. [ 5–8 ] However, these studies have been at the population level and therefore are not granular enough to identify actionable interventions to narrow these disparities. [ 9 ]…”

Section: Introductionmentioning

confidence: 99%

Caregiver perspectives on the everyday medical and social needs of long‐term pediatric liver transplant patients

et al. 2022

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Using in‐depth interviews, we sought to characterize the everyday medical and social needs of pediatric liver transplant caregivers to inform the future design of solutions to improve care processes. Participants (parents/caregivers of pediatric liver transplant recipients) completed a survey (assessing socioeconomic status, economic hardship, health literacy, and social isolation). We then asked participants to undergo a 60‐min virtual, semistructured qualitative interview to understand the everyday medical and social needs of the caregiver and their household. We intentionally oversampled caregivers who reported a social or economic hardship on the survey. Transcripts were analyzed using thematic analysis and organized around the Capability, Opportunity, Motivation–Behavior model. A total of 18 caregivers participated. Of the participants, 50% reported some form of financial strain, and about half had less than 4 years of college education. Caregivers had high motivation and capability in executing transplant‐related tasks but identified several opportunities for improving care. Caregivers perceived the health system to lack capability in identifying and intervening on specific family social needs. Caregiver interviews revealed multiple areas in which family supports could be strengthened, including (1) managing indirect costs of prolonged hospitalizations (e.g., food, parking), (2) communicating with employers to support families' needs, (3) coordinating care across hospital departments, and (4) clarifying care team roles in helping families reduce both medical and social barriers. This study highlights the caregiver perspective on barriers and facilitators to posttransplant care. Future work should identify whether these themes are present across transplant centers. Caregiver perspectives should help inform future interventions aimed at improving long‐term outcomes for children after liver transplantation.

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“…For example, just as 1‐year and 3‐year survival outcomes are publicly reported, regulatory bodies could incentivize transplant institutions to provide social care by developing and reporting a “health equity” metric. ( 24 ) The NASEM committee underscored a final community‐focused social care activity, advocacy , which refers to work that changes policies that influence the availability of health and social services. In liver transplant, this advocacy work might target policies that determine the out‐of‐pocket expenses encountered by children/families after liver transplant.…”

Section: Opportunities For Social Care Intervention Researchmentioning

confidence: 99%

Addressing Social Adversity to Improve Outcomes for Children After Liver Transplant

et al. 2021

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The social determinants of health, defined as the conditions in which we live, learn, work, and play, undoubtedly impact health outcomes. Social adversity in childhood perpetuates over the life course and has consequences extending into adulthood. This link between social adversity and adverse outcomes extends to children undergoing liver transplant, with children from socioeconomically deprived neighborhoods experiencing a greater burden of morbidity and mortality after transplant. Yet, we lack an in-depth understanding of how to address social adversity for these children. Herein, we lay out a strategy to develop and test interventions to address social adversity for children undergoing liver transplant. To do so, we believe that more granular data on how specific social risk factors (e.g., food insecurity) impact outcomes for children after liver transplant are needed. This will provide the liver transplant community with knowledge on the most pressing problems. Then, using the National Academies of Sciences, Engineering, and Medicine's framework for integrating social needs into medical care, the health system can start to develop and test health system interventions. We believe that attending to our patients' social adversity will realize improved outcomes for children undergoing liver transplant. (Hepatology 2021;74:2824-2830).C linical scenario: Luis (age 5 years) received a transplant 2 years ago for biliary atresia and is in the liver clinic for his annual appointment. When the hepatologist opens the electronic health record, she notices that his medication level variability index (MLVI) is high, suggesting poor medication adherence. She counsels the patient/family on the importance of taking his medications and advises them to set up an app on their smartphone. What she does not realize, however, is that the family has been receiving eviction notices from their landlord. They have been so preoccupied with the threat of eviction that they have overlooked aspects of their child's liver transplant care. This physician, without the proper tools at her disposal, missed an important root cause of this child's poor adherence and, in turn, missed an opportunity to improve this child's adherence. Yet, a brief screening tool in the clinic waiting room may have allowed this clinician to identify and intervene on Luis' unstable housing.The social determinants of health, defined as the conditions in which we live, learn, work, and play, strongly influence health outcomes (1) ; health and disease are inextricably linked to factors extending beyond the walls of the hospital or clinic. (2) The term "social determinants of health" reflects many intersecting domains, including structural issues like affordable housing, school quality, and neighborhood safety that lead to downstream consequences such as poverty. These environmental influences are particularly salient for children and accumulate over the life course. (1) For example, exposure to violence in childhood leads to a lower intelligence quotient later in life, (3...

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Center variation in long-term outcomes for socioeconomically deprived children

Cited by 20 publications

References 31 publications

A review of racial, socioeconomic, and geographic disparities in pediatric liver transplantation

A review of racial, socioeconomic, and geographic disparities in pediatric liver transplantation

Caregiver perspectives on the everyday medical and social needs of long‐term pediatric liver transplant patients

Addressing Social Adversity to Improve Outcomes for Children After Liver Transplant

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