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Older Latino adults (aged 65+years) comprise the fastest growing minoritized group among the older population in the United States and experience a disproportionate burden of kidney failure as well as disparities in kidney care compared with non-Hispanic White individuals. Despite significant need and barriers uniquely faced by this population, few educational resources or decision aids are available to meet the language and cultural needs of Latino patients. Decision aids are designed to improve knowledge and empower individuals to engage in shared decision making and have been shown to improve decisional quality and goal-concordant care among older patients with chronic kidney disease (CKD). In this commentary, we examine the barriers faced by older Latino people with CKD who must make dialysis initiation decisions. We conclude that there is a need for culturally concordant decision aids tailored for older Latino patients with CKD to overcome barriers in access to care and improve patient-centered care for older Latino CKD patients., (Copyright © 2024 The Authors. Published by Elsevier Inc. All rights reserved.)

Purpose of Review: Disparities in access to transplantation are persistent and pervasive among minoritized populations, and remain incompletely explained by socioeconomic status, insurance, geography, or medical factors. Although much attention has been paid to factors contributing to disparities in organ allocation, fewer studies have focused on barriers to the transplant waitlist. Given increasing calls for equity in organ transplantation, we examine the role of nonmedical factors used in transplant listing decisions, including psychosocial factors like social support, motivation, and knowledge in improving utility in transplant listing decisions, as well as their potential for reinforcing bias., Recent Findings: Minoritized groups are more likely to be declined from transplant listing owing to psychosocial criteria. Lack of consistent definitions, screening tools with differential subgroup validity, and insufficient evidence-base contribute to concerns about reliance on psychosocial factors in transplant listing decisions., Summary: Improving consistency and evidence-based approaches in patient evaluation and listing decisions will require greater efforts to identify which psychosocial risk factors are predictive of posttransplant outcomes. Social needs screening presents a strengths-based framework for incorporating psychosocial factors in transplant listing decisions., (Copyright © 2025 Wolters Kluwer Health, Inc. All rights reserved.)

Clinical prediction models (CPMs) are tools that compute the risk of an outcome given a set of patient characteristics and are routinely used to inform patients, guide treatment decision-making, and resource allocation. Although much hope has been placed on CPMs to mitigate human biases, CPMs may potentially contribute to racial disparities in decision-making and resource allocation. While some policymakers, professional organizations, and scholars have called for eliminating race as a variable from CPMs, others raise concerns that excluding race may exacerbate healthcare disparities and this controversy remains unresolved. The Guidance for Unbiased predictive Information for healthcare Decision-making and Equity (GUIDE) provides expert guidelines for model developers and health system administrators on the transparent use of race in CPMs and mitigation of algorithmic bias across contexts developed through a 5-round, modified Delphi process from a diverse 14-person technical expert panel (TEP). Deliberations affirmed that race is a social construct and that the goals of prediction are distinct from those of causal inference, and emphasized: the importance of decisional context (e.g., shared decision-making versus healthcare rationing); the conflicting nature of different anti-discrimination principles (e.g., anticlassification versus antisubordination principles); and the importance of identifying and balancing trade-offs in achieving equity-related goals with race-aware versus race-unaware CPMs for conditions where racial identity is prognostically informative. The GUIDE, comprising 31 key items in the development and use of CPMs in healthcare, outlines foundational principles, distinguishes between bias and fairness, and offers guidance for examining subgroup invalidity and using race as a variable in CPMs. This GUIDE presents a living document that supports appraisal and reporting of bias in CPMs to support best practice in CPM development and use., (© 2024. The Author(s).)

After 2 decades of limited growth, living donor liver transplant (LDLT) has been increasingly accepted as a promising solution to the growing organ shortage in the US. With experience, LDLT offers superior graft and patient survival with low rates of rejection. However, not all waitlisted patients have equal access to LDLT, with financial toxicity representing a substantial barrier. Potential living liver donors face indirect, direct, and opportunity costs associated with donation as well as insurance-based discrimination and variable employer leave policies. There are multiple potential national, local, and patient-centered solutions to address some of the cost-related issues associated with living LDLT. These include standardization of employer leave policies, creation of federal and state-led tax relief programs, optimization of National Living Donor Assistance Center use, engagement of independent living donor advocates, creation of financial toolkits, and encouragement of recipient or donor-led fundraising. In this piece, members of the North American Living Liver Donation Group, a consortium of 37 LDLT programs, explore these financial challenges and discuss solutions to achieve financial neutrality, where individuals can donate free from financial constraints or gains. As a community, it is imperative that we confront factors driving financial toxicity to improve equity and access to LDLT., Competing Interests: Declaration of competing interest The authors of this manuscript have no conflicts of interest to disclose as described by the American Journal of Transplantation., (Copyright © 2024 American Society of Transplantation & American Society of Transplant Surgeons. Published by Elsevier Inc. All rights reserved.)

The management of locally advanced rectal cancer has undergone significant transformations over the decades and optimal treatment approaches continue to evolve. There have been numerous advances in surgery, chemotherapy, and radiation therapy from the first description of the abdominoperineal resection in 1908, timing of chemotherapy and radiation therapy in the late 20th and early 21st century, and most recently, the introduction of organ preservation or nonoperative management in 2004. Alongside these advancements, the concept of shared decision making in medicine has evolved, prompting a focus on patient-centered care. This evolution in practice has been fueled by a growing recognition of the importance of patient autonomy and the alignment of treatment options with patients' values and preferences. With the growing number of possible treatment options, variability in patient counseling exists, highlighting the need for a standardized approach to shared decision making in locally advanced rectal cancer. This narrative review will describe the evolution of treatment options of locally advanced rectal cancer as well as the concept of shared decision making and decision aids, and will introduce a decision aid for patients with locally advanced rectal cancer who have achieved a complete clinical response and are eligible for watch and wait.

In a workshop sponsored by the U.S. National Heart, Lung, and Blood Institute, experts identified current knowledge gaps and research opportunities in the scientific, conceptual, and ethical understanding of organ donation after the circulatory determination of death and its technologies. To minimize organ injury from warm ischemia and produce better recipient outcomes, innovative techniques to perfuse and oxygenate organs postmortem in situ, such as thoracoabdominal normothermic regional perfusion, are being implemented in several medical centers in the US and elsewhere. These technologies have improved organ outcomes but have raised ethical and legal questions. Re-establishing donor circulation postmortem can be viewed as invalidating the condition of permanent cessation of circulation on which the earlier death determination was made and clamping arch vessels to exclude brain circulation can be viewed as inducing brain death. Alternatively, TA-NRP can be viewed as localized in-situ organ perfusion, not whole-body resuscitation, that does not invalidate death determination. Further scientific, conceptual, and ethical studies, such as those identified in this workshop, can inform and help resolve controversies raised by this practice., Competing Interests: Conflict of interest statement James L. Bernat has no conflicts of interest to disclose. All authors have submitted completed JHLT conflict of interest disclosure forms., (Copyright © 2024 International Society for the Heart and Lung Transplantation. Published by Elsevier Inc. All rights reserved.)

Rationale & Objective: Few older adults with kidney failure engage in shared decision making (SDM) for kidney replacement therapy. The lack of instruments to assess SDM-relevant knowledge domains may contribute to this. We assessed the reliability and validity of a new instrument, the Rating of CKD Knowledge Older Adults (Know-CKD)., Study Design: Multistage process, including a stakeholder-engaged development phase, pilot testing, and validation of a knowledge instrument using a cross-sectional survey of older adults with CKD., Setting & Participants: 363 patients aged 70+years with nondialysis advanced chronic kidney disease (CKD) (estimated glomerular filtration rate [eGFR]<30mL/min/1.73m 2 ) in Boston, Chicago, Portland, ME, and San Diego from June 2018 and January 2020., Exposure: Educational level, higher literacy (Single Item Literacy Screener [SILS]) and numeracy (Subjective Numeracy Scale [SNS]), having participated in clinic-sponsored dialysis education, and self-reported "feeling informed" about options for treatment., Outcome: Validity and reliability of the Know-CKD instrument., Analytical Approach: Reliability was assessed with the Kuder-Richardson-20 coefficient. Construct validity was demonstrated by testing a priori hypotheses using t test, analysis of variance (ANOVA) tests, and linear regression analyses., Results: The mean (± SD) participant age was 77.6±5.9 years, and mean eGFR was 22.7±7.2mL/min/1.73m 2 ; 281 participants (78%) self-reported as White. The 12-item Know-CKD assessment had good reliability (Kuder-Richardson-20 reliability coefficient=0.75), and a mean score of 58.2% ± 22.3 SD. The subscales did not attain acceptable reliability. The proportion answering correctly on each item ranged from 20.1% to 91.7%. In examining construct validity, the hypothesized associations held; Know-CKD significantly associated with higher education (β=6.98 [95% CI, 1.34-12.61], P=0.02), health literacy (β = -12.67 [95% CI, -19.49 to-5.86], P≤0.001), numeracy per 10% higher (β=1.85 [95% CI, 1.02-2.69], P≤0.001), and attendance at dialysis class (β=18.28 [95% CI, 13.30-23.27], P≤0.001). These associations were also observed for the subscales except for prognosis (not associated with literacy or numeracy)., Limitations: Know-CKD is only available in English and has been used only in research settings., Conclusions: For older adults facing dialysis initiation decisions, Know-CKD is a valid, reliable, and easy to administer measure of knowledge. Further research should examine the relationship of kidney disease knowledge and SDM, patient satisfaction, and clinical outcomes., Plain-Language Summary: The Rating of CKD Knowledge Among Older Adults (Know-CKD) study measures knowledge of chronic kidney disease (CKD) and is designed for older adults. Most existing knowledge measures for CKD focus on people of all ages and all CKD stages. This measure is useful because it will allow researchers to assess how well patient education efforts are working. Patient education is a way to help patients make decisions about their care. We describe how the measure was developed by a team of doctors, researchers, and patients, and how the measure performed among persons with advanced CKD aged 70 years and older. Know-CKD can inform efforts to improve shared decision-making research and practice for older patients with kidney disease., (Copyright © 2023 National Kidney Foundation, Inc. Published by Elsevier Inc. All rights reserved.)

Psychosocial assessment is a standard component of patient evaluations for transplant candidacy. The Stanford Integrated Psychosocial Assessment for Transplant (SIPAT) is a widely used measure to assess psychosocial risk for transplant. However, there are questions regarding the SIPAT's reliability and validity. We examined the SIPAT's psychometric performance and its impact on equitable access to transplant in a diverse cohort of 2825 patients seeking liver transplantation between 2014 and 2021 at an urban transplant center. The SIPAT demonstrated good internal consistency reliability at the overall score [Cronbach's α = 0.85, 95% CI (0.83, 0.86)] and domain levels (0.80 > α > 0.70). There was mixed support for structural validity, with poor overall model fit in confirmatory factor analysis and 50% of questions achieving the 0.70-factor loadings threshold. Adjusting for sociodemographic variables, the odds of not being waitlisted for psychosocial reasons were three times higher for patients with Medicaid insurance than patients with private insurance [OR 3.24, 95% CI (2.09, 4.99)] or Medicare [OR 2.89, 95% CI (1.84, 4.53)], mediated by higher SIPAT scores. Black patients had nearly twice the odds of White patients [OR 1.88, 95% CI (1.20, 2.91)], partially mediated by higher social support domain scores. Patients with Medicaid, non-White patients, and those without a college degree scored significantly higher on collinear questions, disproportionately contributing to higher SIPAT scores. The SIPAT did not perform equally across insurance type, race/ethnicity, and education groups, with the lowest subgroup validity associated with patient readiness and psychopathology domains. The SIPAT should be interpreted with caution, especially as a composite score. Future studies should examine validity in other populations., (Copyright © 2023 American Association for the Study of Liver Diseases.)

Patients with cirrhosis frequently experience an unpredictable illness trajectory, with frequent hospitalizations and complications. Along with the uncertain nature of the disease, the possibility of a lifesaving and curative transplant often makes prognostic discussions and future care decisions challenging. Serious illness communication (SIC) refers to supportive communication whereby clinicians assess patients' illness understanding, share prognostic information according to patients' preferences, explore patients' goals, and make recommendations for care that align with these goals. SIC includes 3 key components: (1) illness understanding; (2) prognostic understanding; and (3) care planning. In this piece, we explore current barriers to early implementation of SIC in cirrhosis care and share possible solutions, including adopting a multidisciplinary approach, delivering culturally competent care, and training clinicians in SIC core skills. By use of a case example, we aim to demonstrate SIC in action and to provide clinicians with tools and skills that can be used in practice., Competing Interests: Conflicts of Interest: The authors disclose no conflicts.

Introduction: Informational needs and potential use of transplant metrics, especially among patients, remain understudied and a critical component of the transplant community's commitment to patient-centered care. We sought to understand the perspectives and needs of patients, family members/caregivers, living donors, and deceased donor family members., Methods: We examined decision-making experiences and perspectives on the needs of these stakeholder groups for data about the national transplant system among 58 participants of 14 focus groups and 6 interviews., Results: Three major themes emerged: 1) informational priorities and unmet needs (transplantation system processes, long-term outcomes data, prelisting data, patient-centered outcomes, and ability to compare centers and regions); 2) challenges obtaining relevant and trustworthy information (patient burden and effort, challenges with medical jargon, and difficulty finding trustworthy information); and 3) burden of facing the unknown (stress and anxiety leading to difficulty processing information, challenges facing the transplant journey when you "don't know what you don't know")., Conclusion: Patient, family member, and living donor participation in shared decision-making has been limited by inadequate access to patient-centered information. New metrics and patient-facing data presentations should address these content gaps using best practices to improve understanding and support shared decision-making., (© 2024 John Wiley & Sons A/S. Published by John Wiley & Sons Ltd.)

The transplant community has faced unprecedented challenges balancing risks of performing living donor transplants during the COVID-19 pandemic with harms of temporarily suspending these procedures. Decisions regarding postponement of living donation stem from its designation as an elective procedure, this despite that the Centers for Medicare and Medicaid Services categorise transplant procedures as tier 3b (high medical urgency-do not postpone). In times of severe resource constraints, health systems may be operating under crisis or contingency standards of care. In this manuscript, the United Network for Organ Sharing Ethics Workgroup explores prioritisation of living donation where health systems operate under contingency standards of care and provide a framework with recommendations to the transplant community on how to approach living donation in these circumstances.To guide the transplant community in future decisions, this analysis suggests that: (1) living donor transplants represent an important option for individuals with end-stage liver and kidney disease and should not be suspended uniformly under contingency standards, (2) exposure risk to SARS-CoV-2 should be balanced with other risks, such as exposure risks at dialysis centres. Because many of these risks are not quantifiable, donors and recipients should be included in discussions on what constitutes acceptable risk, (3) transplant hospitals should strive to maintain a critical transplant workforce and avoid diverting expertise, which could negatively impact patient preparedness for transplant, (4) transplant hospitals should consider implementing protocols to ensure early detection of SARS-CoV-2 infections and discuss these measures with donors and recipients in a process of shared decision-making., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2023. Re-use permitted under CC BY. Published by BMJ.)

Worsened by the COVID-19 pandemic, alcohol use is one of the leading causes of preventable death in the US, in large part due to alcohol-associated liver disease. Throughout history, liver transplantation for this population has been controversial, and many policies and regulations have existed to limit access to lifesaving transplant for patients who use alcohol. In recent years, the rates of liver transplantation for patients with alcohol-associated liver disease have increased dramatically; however, disparities persist. For instance, many criteria used in evaluation for transplant listing, such as social support and prior knowledge of the harms of alcohol use, are not evidence based and may selectively disadvantage patients with alcohol use disorder. In addition, few transplant providers have adequate training in the treatment of alcohol use disorder, and few transplant centers offer specialized addiction treatment. Finally, current approaches to liver transplantation would benefit from adopting principles of harm reduction, which have demonstrated efficacy in the realm of addiction medicine for years. As we look toward the future, we must emphasize the use of evidence-based measures in selecting patients for listing, ensure access to high-quality addiction care for all patients pretransplant and posttransplant, and adopt harm reduction beliefs to better address relapse when it inevitably occurs. We believe that only by addressing each of these issues will we be able to ensure a more equitable distribution of resources in liver transplantation for all patients., (Copyright © 2023 American Association for the Study of Liver Diseases.)

Background: Although advance care planning (ACP) for persons with dementia (PWD) can promote patient-centered care by aligning future healthcare with patient values, few PWD have documented ACPs for reasons incompletely understood. The objective of this paper is to characterize the perceived value of, barriers to, and successful strategies for completing ACP for PWD as reported by frontline clinicians., Methods: Qualitative study using semi-structured interviews (August 2018-December 2019) with clinicians (physicians, nurse practitioners, nurses, social workers) at 11 US health systems. Interviews asked clinicians about their approaches to ACP with PWDs, including how ACP was initiated, what was discussed, how carepartners were involved, how decision-making was approached, and how decision-making capacity was assessed., Results: Of 75 participating generalist and specialty clinicians from across the United States, 61% reported conducting ACP with PWD, of whom 19% conducted ACP as early as possible with PWD. Three themes emerged: value of early ACP preserves PWD's autonomy in cases of differing PWD carepartner values, acute medical crises, and clinician paternalism; barriers to ACP with PWD including the dynamic and subjective assessment of patient decision-making capacity, inconsistent awareness of cognitive impairment by clinicians, and the need to balance patient and family carepartner involvement; and strategies to support ACP include clarifying clinicians' roles in ACP, standardizing clinicians' approach to PWD and their carepartners, and making time for ACP and decision-making assessments that allow PWD and carepartner involvement regardless of the patients' capacity., Conclusions: Clinicians found early ACP for PWD valuable in promoting patient-centered care among an at-risk population. In sharing their perspectives on conducting ACP for PWD, clinicians described challenges that are amenable to changes in training, workflow, and material support for clinician time. Clinical practices need sustainable scheduling and financial support models., (© 2022 The American Geriatrics Society.)

Rationale & Objective: The National Kidney Foundation (NKF) launched the first national US kidney disease patient registry, the NKF Patient Network, that is open to patients throughout the continuum of chronic kidney disease (CKD). The Network provides individualized education and will facilitate patient-centered research, clinical care, and health policy decisions. Here, we present the overall design and the results of a feasibility study that was conducted July through December 2020., Study Design: Longitudinal observational cohort study of patient-entered data with or without electronic health care record (EHR) linkage in collaboration with health systems., Setting & Participants: People with CKD, age≥18 years, are invited through their provider, NKF communications, or national outreach campaign. People self-enroll and share their data through a secure portal that offers individualized education and support. The first health system partner is Geisinger., Exposure: Any cause and stage of CKD, including dialysis and kidney transplant recipients., Outcome: Feasibility of the EHR data transfer, participants' characteristics, and their perspectives on usability and content., Analytical Approach: Data were collected and analyzed through the registry portal powered by the Pulse Infoframe healthie 2.0 platform., Results: During the feasibility study, 80 participants completed their profile, and 42 completed a satisfaction survey. Mean age was 57.5 years, 51% were women, 83% were White, and 89% were non-Hispanic or Latino. Of the participants, 60% were not aware of their level of estimated glomerular filtration rate and 91% of their urinary albumin-creatinine ratio., Limitations: Challenges for the Network are lack of awareness of kidney disease for many with CKD, difficulty in recruiting vulnerable populations or those with low digital readiness, and loss to follow-up, all leading to selection bias., Conclusions: The Network is positioned to become a national and international platform for real-world data that can inform the development of patient-centered research, care, and treatments., (Copyright © 2022. Published by Elsevier Inc.)

Background: Older patients with advanced chronic kidney disease (CKD) face difficult decisions about managing kidney failure, frequently experiencing decisional conflict, regret, and treatment misaligned with preferences., Objective: To assess whether a decision aid about kidney replacement therapy improved decisional quality compared with usual care., Design: Multicenter, randomized, controlled trial. (ClinicalTrials.gov: NCT03522740)., Setting: 8 outpatient nephrology clinics associated with 4 U.S. centers., Participants: English-fluent patients, 70 years and older with nondialysis CKD stages 4 to 5 recruited from 2018 to 2020., Intervention: DART (Decision-Aid for Renal Therapy) is an interactive, web-based decision aid for older adults with CKD. Both groups received written education about treatments., Measurements: Change in the decisional conflict scale (DCS) score from baseline to 3, 6, 12, and 18 months. Secondary outcomes included change in prognostic and treatment knowledge and change in uncertainty., Results: Among 400 participants, 363 were randomly assigned: 180 to usual care, 183 to DART. Decisional quality improved with DART with mean DCS declining compared with control (mean difference, -8.5 [95% CI, -12.0 to -5.0]; P  < 0.001), with similar findings at 6 months, attenuating thereafter. At 3 months, knowledge improved with DART versus usual care (mean difference, 7.2 [CI, 3.7 to 10.7]; P  < 0.001); similar findings at 6 months were modestly attenuated at 18 months (mean difference, 5.9 [CI, 1.4 to 10.3]; P  = 0.010). Treatment preferences changed from 58% "unsure" at baseline to 28%, 20%, 23%, and 14% at 3, 6, 12, and 18 months, respectively, with DART, versus 51% to 38%, 35%, 32%, and 18% with usual care., Limitation: Latinx patients were underrepresented., Conclusion: DART improved decision quality and clarified treatment preferences among older adults with advanced CKD for 6 months after the DART intervention., Primary Funding Source: Patient-Centered Outcomes Research Institute (PCORI).

Background: Adolescent transplant patients are at increased risk for graft loss at a period when they also suffer from illness-related social isolation, which has been exacerbated by the COVID-19 pandemic. The Peer Mentoring Program (PMP), developed in 2018, was adapted to a virtual format in 2020 due to COVID-19. Our objective is to evaluate the acceptability, utility, and potential impact of the in-person and virtual versions of the PMP on participants., Methods: We performed convergent mixed-methods analysis of the experiences of patients participating in the PMP for quality improvement purposes., Results: Surveys and focus group invitations were sent to 18 current program participants, with 17 patients responding to the survey and 13 patients participating in focus groups. In this study, 82% were satisfied and 88% would recommend PMP; 76% identified other PMP members as people they would like to keep in touch with. Qualitative analysis revealed three themes: (1) a supportive community of peers, (2) reduced isolation, and (3) receiving accurate information from providers., Conclusions: There is a prominent need for greater peer support among adolescent transplant patients transitioning to adulthood, especially with the increased isolation associated with COVID-19. The virtual adaptation could be an important, permanent supplement to in-person events., (© 2022 Wiley Periodicals LLC.)

Rationale & Objective: Older adults with advanced chronic kidney disease (CKD) face difficult decisions about dialysis initiation. Although shared decision making (SDM) can help align patient preferences and values with treatment options, the extent to which older patients with CKD experience SDM remains unknown., Study Design: A cross-sectional analysis of patient surveys examining decisional readiness, treatment options education, care partner support, and SDM., Setting & Participants: Adults aged 70 years or older from Boston, Chicago, San Diego, or Portland (Maine) with nondialysis advanced CKD., Predictors: Decisional readiness factors, treatment options education, and care partner support., Outcomes: Primary: SDM measured by the 9-item Shared Decision Making Questionnaire (SDM-Q-9) instrument, with higher scores reflecting greater SDM. Exploratory: Factors associated with SDM., Analytical Approach: We used multivariable linear regression models to examine the associations between SDM and predictors, controlling for demographic and health factors., Results: Among 350 participants, mean age was 78 ± 6 years, 58% were male, 13% identified as Black, and 48% had diabetes. Mean SDM-Q-9 score was 52 ± 28. SDM item agreement ranged from 41% of participants agreeing that "my doctor and I selected a treatment option together" to 73% agreeing that "my doctor told me that there are different options for treating my medical condition." In multivariable analysis adjusted for demographic characteristics, lower estimated glomerular filtration rate, and diabetes, being "well informed" and "very well informed" about kidney treatment options, having higher decisional certainty, and attendance at a kidney treatment options class were independently associated with higher SDM-Q-9 scores., Limitations: The cross-sectional study design limits the ability to make temporal associations between SDM and the predictors., Conclusions: Many older patients with CKD do not experience SDM when making dialysis decisions, emphasizing the need for greater access to and delivery of education for individuals with advanced CKD., (Published by Elsevier Inc.)