Financial toxicity in living donor liver transplantation: A call to action for financial neutrality.

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.

Assessing reliability and validity of SIPAT and opportunities for improvement: A single-center cohort study.

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.

"You don't know what you don't know": A qualitative study of informational needs of patients, family members, and living donors to inform transplant system metrics.

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.

Effectiveness of an Intervention to Improve Decision Making for Older Patients With Advanced Chronic Kidney Disease : A Randomized Controlled Trial.

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).

Liver transplantation in alcohol-associated liver disease: ensuring equity through new processes.

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.

Development and Validation of the Rating of CKD Knowledge Among Older Adults (Know-CKD) With Kidney Failure.

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/1.73m2) 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/1.73m2; 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 (ß=6.98 [95% CI, 1.34-12.61], P=0.02), health literacy (ß = -12.67 [95% CI, -19.49 to-5.86], P≤0.001), numeracy per 10% higher (ß=1.85 [95% CI, 1.02-2.69], P≤0.001), and attendance at dialysis class (ß=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.

A National Registry for People With All Stages of Kidney Disease: The National Kidney Foundation (NKF) Patient Network.

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.

Ethical analysis examining the prioritisation of living donor transplantation in times of healthcare rationing.

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.

The Surgeon's Perceived Value of Patient-reported Outcome Measures (PROMs): An Exploratory Qualitative Study of 5 Different Surgical Subspecialties.

OBJECTIVE: To understand the surgeon's perceived value of PROMs in 5 different surgical subspecialties. SUMMARY OF BACKGROUND DATA: PROMs are validated questionnaires that assess the symptoms, function, and quality of life from the patient's perspective. Despite the increasing support for use of PROMs in the literature, there is limited uptake amongst surgeons. Furthermore, there is insufficient understanding of the surgeons' perceived value of PROMs. The aim of this study is to understand how surgeons perceive value in PROMs. METHODS: We conducted an exploratory qualitative study to understand the perceived value of PROMs from the perspective of surgeons in various subspecialties. Per convenience sampling, we conducted semi-structured interviews with 30 surgeons from 5 subspecialties across 3 academic medical centers. The surgical subspecialties included bariatric surgery, breast oncologic surgery, orthopedic surgery, plastic and reconstructive surgery, and rhinology. Interviews were transcribed, coded, and evaluated with thematic analysis. RESULTS: Surgeons endorsed that PROMs can be used to enhance clinical management, counsel patients in the preoperative and postoperative settings, and elicit sensitive information from patients that otherwise may go undetected. Obstacles to PROMs use include failure to generate actionable data, implementation obstacles, and inappropriate use of PROMs as a performance metric, with concerns regarding inadequate risk adjustment. CONCLUSIONS: Establishing an effective PROMs program requires an understanding of the surgeon's perspective of PROMs. Despite obstacles, different subspecialty surgeons find PROMs to be valuable in different settings, depending on the specialty and clinical context.

A Population Health Approach to Transplant Access: Challenging the Status Quo.

Transplant referral and evaluation are critical steps to waitlisting yet remain an elusive part of the transplant process. Despite calls for more data collection on pre-waitlisting steps, there are currently no national surveillance data to aid in understanding the causes and potential solutions for the extreme variation in access to transplantation. As population health scientists, epidemiologists, clinicians, and ethicists we submit that the transplant community has an obligation to better understand disparities in transplant access as a first necessary step to effectively mitigating these inequities. Our position is grounded in a population health approach, consistent with several new overarching national policy and quality initiatives. The purpose of this Perspective is to (1) provide an overview of how a population health approach should inform current multisystem policies impacting kidney transplantation and demonstrate how these efforts could be enhanced with national data collection on pre-waitlisting steps; (2) demonstrate the feasibility and concrete next steps for pre-waitlisting data collection; and (3) identify potential opportunities to use these data to implement effective population-level interventions, policies, and quality measures to improve equity in access to kidney transplantation.

Shared Decision Making Among Older Adults With Advanced CKD.

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.

Practice Billing for Medicare Advance Care Planning Across the USA.

BACKGROUND: Medicare introduced billing codes in 2016 to encourage clinicians to engage in advance care planning (ACP) and promote goal-concordantend-of-life care, but uptake has been modest. While prior research examined individual-level factors in ACP billing, organization-level factors associated with physician practices billing for ACP remain unknown. OBJECTIVE: Examine the role of practices in ACP billing. DESIGN: Retrospective cohort study analyzing 2016-2018 national Medicare data. PARTICIPANTS: A total of 53,926 practices with at least 10 attributed Medicare beneficiaries. MAIN MEASURES: Outcomes were practice-level ACP billing (any use by the practice) and ACP use rate by practice-attributed beneficiaries. Practice characteristics were number of beneficiaries attributed to the practice; percentage of beneficiaries by race, Medicare-Medicaid dual enrollment, sex, and age; practice size; and specialty mix. KEY RESULTS: Fifteen percent of practices billed for ACP. In adjusted models, we found higher odds of ACP billing and higher ACP use rates among practices with more primary care physicians (billing AOR: 10.01, 95%CI: 8.81-11.38 for practices with 75-100% (vs 0) primary care physicians), and those serving more Medicare beneficiaries (billing AOR: 4.55, 95%CI 4.08-5.08 for practices with highest (vs lowest) quintile of beneficiaries), and larger shares of female beneficiaries (billing AOR: 3.06, 95% CI 2.01-4.67 for 75-100% (vs <25%) female ). CONCLUSIONS: Several years after Medicare introduced ACP reimbursements for physicians, relatively few practices bill for ACP. ACP billing was more likely in large practices with a greater percentage of primary care physicians. To increase ACP billing uptake, policymakers and health system leaders might target interventions to larger practices where a small number of physicians already bill for ACP and to specialty practices that serve as the primary source of care for seriously ill patients.

Is This ACP? A Focus Group Study of Patient Experiences of Advance Care Planning.

BACKGROUND: To date, most research on patients' experiences with advance care planning (ACP) focuses on motivations to engage in discussions and how patients prepare. Gaps remain in understanding how non-critically ill Medicare patients perceive ACP encounters, including how they characterize positive and negative experiences with ACP. OBJECTIVES: Understanding these patients' perceptions is imperative as Medicare has sought to incentivize provision of ACP services via two billing codes in 2016. DESIGN: Qualitative focus group study. Thematic analysis was performed to assess participants ACP experience. PARTICIPANTS: Medicare beneficiaries who had engaged in or were billed for ACP. KEY RESULTS: Seven focus groups were conducted with 34 Medicare beneficiaries who had engaged in ACP across 5 US health systems. Participants described a spectrum of perceptions regarding ACP, and a range of delivery approaches, including group ACP, discussions with specialists during serious illness, and ACP in primary care settings during wellness visits. Despite being billed for ACP or having ACP services noted in their medical record, many did not recognize that they had engaged in ACP, expressed lack of clarity over the term "ACP," and were unaware of the Medicare billing codes. Among participants who described quality patient-centered ACP experiences, three additional themes were identified: trusted and established patient/clinician relationships, transparent communication and documentation, and an understanding that ACP is revisable. Participants offered recommendations for clinicians and health systems to improve the patient ACP experience. CONCLUSIONS: Findings include actionable steps to promote patient-centered ACP experiences, including clinician training to support improved communication and facilitating shared decision-making, allocating sufficient clinical time for discussions, and ensuring that documentation of preferences is clear and accessible. Other approaches such as group ACP and ACP navigators may help to support patient interests within clinical constraints and need to be further explored.

Acceptability and utility of a virtual pediatric transplant peer mentoring program: A mixed-methods analysis of a novel quality improvement program.

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.

Associations among political voting preference, high-risk health status, and preventative behaviors for COVID-19.

BACKGROUND: We investigate the relationships among political preferences, risk for COVID-19 complications, and complying with preventative behaviors, such as social distancing, quarantine, and vaccination, as they remain incompletely understood. Since those with underlying health conditions have the highest mortality risk, prevention strategies targeting them and their caretakers effectively can save lives. Understanding caretakers' adherence is also crucial as their behavior affects the probability of transmission and quality of care, but is understudied. Examining the degree to which adherence to prevention measures within these populations is affected by their health status vs. voting preference, a key predictor of preventative behavior in the U. S, is imperative to improve targeted public health messaging. Knowledge of these associations could inform targeted COVID-19 campaigns to improve adherence for those at risk for severe consequences. METHODS: We conducted a nationally-representative online survey of U.S. adults between May-June 2020 assessing: 1) attempts to socially-distance; 2) willingness/ability to self-quarantine; and 3) intention of COVID-19 vaccination. We estimated the relationships between 1) political preferences 2) underlying health status, and 3) being a caretaker to someone with high-risk conditions and each dependent variable. Sensitivity analyses examined the associations between political preference and dependent variables among participants with high-risk conditions and/or obesity. RESULTS: Among 908 participants, 75.2% engaged in social-distancing, 94.4% were willing/able to self-quarantine, and 60.1% intended to get vaccinated. Compared to participants intending to vote for Biden, participants who intended to vote for Trump were significantly less likely to have tried to socially-distance, self-quarantine, or intend to be vaccinated. We observed the same trends in analyses restricted to participants with underlying health conditions and their caretakers Underlying health status was independently associated with social distancing among individuals with obesity and another high-risk condition, but not other outcomes. CONCLUSION: Engagement in preventative behavior is associated with political voting preference and not individual risk of severe COVID-19 or being a caretaker of a high-risk individual. Community based strategies and public health messaging should be tailored to individuals based on political preferences especially for those with obesity and other high-risk conditions. Efforts must be accompanied by broader public policy.

Advance Care Planning in Older Adults with CKD: Patient, Care Partner, and Clinician Perspectives.

BACKGROUND: Older patients with advanced CKD are at high risk for serious complications and death, yet few discuss advance care planning (ACP) with their kidney clinicians. Examining barriers and facilitators to ACP among such patients might help identify patient-centered opportunities for improvement. METHODS: In semistructured interviews in March through August 2019 with purposively sampled patients (aged ≥70 years, CKD stages 4-5, nondialysis), care partners, and clinicians at clinics in across the United States, participants described discussions, factors contributing to ACP completion or avoidance, and perceived value of ACP. We used thematic analysis to analyze data. RESULTS: We conducted 68 semistructured interviews with 23 patients, 19 care partners, and 26 clinicians. Only seven of 26 (27%) clinicians routinely discussed ACP. About half of the patients had documented ACP, mostly outside the health care system. We found divergent ACP definitions and perspectives; kidney clinicians largely defined ACP as completion of formal documentation, whereas patients viewed it more holistically, wanting discussions about goals, prognosis, and disease trajectory. Clinicians avoided ACP with patients from minority groups, perceiving cultural or religious barriers. Four themes and subthemes informing variation in decisions to discuss ACP and approaches emerged: (1) role ambiguity and responsibility for ACP, (2) questioning the value of ACP, (3) confronting institutional barriers (time, training, reimbursement, and the electronic medical record, EMR), and (4) consequences of avoiding ACP (disparities in ACP access and overconfidence that patients' wishes are known). CONCLUSIONS: Patients, care partners, and clinicians hold discordant views about the responsibility for discussing ACP and the scope for it. This presents critical barriers to the process, leaving ACP insufficiently discussed with older adults with advanced CKD.

Poorly differentiated hepatocellular carcinoma: resection is equivalent to transplantation in patients with low liver fibrosis.

BACKGROUND: Organ allocation criteria for liver transplantation focus on tumor size and multifocality while tumor differentiation and existing liver damage are omitted. This study analyzes the impact of hepatocellular carcinoma (HCC) grade and liver fibrosis comparing resection (SX) to transplantation (LT). METHODS: The National Cancer Database was queried between 2004 and 2016 for solitary HCC meeting Milan criteria undergoing SX vs LT. Two groups were created: low fibrosis (LF) vs high fibrosis (HF) and stratified by grade. Cox multivariable regression models, Kaplan-Meier survival analyses and log-rank tests were performed. RESULTS: 1515 patients were identified; 780 had LT and 735 had SX. Median overall survival (mOS) was 39.7 months; LT mOS was 47.9 months vs SX mOS of 34.9 months (P < .001). Multivariate analysis revealed SX, no chemotherapy, longer hospital stays, and age to be associated with worse survival. However, while transplantation conferred survival benefit for well-moderately differentiated tumors, SX vs LT did not impact survival for poorly differentiated HCC in LF patients, independent of tumor size. DISCUSSION: HCC differentiation and liver fibrosis, but not size, synergistically determine efficacy of SX vs LT. Therefore, current HCC transplantation criteria should incorporate tumor grade or liver fibrosis for optimal organ allocation.

Factors Influencing Barriers and Facilitators to In-home Video Telehealth for Dementia Management.

OBJECTIVES: Quality dementia care, which recognizes caregivers as vital care partners, is a scarce resource. Innovative solutions like video telehealth may increase the reach of extant clinicians; however, little is known about perceived barriers and facilitators to in-home video telehealth for dementia management from the perspectives of caregivers. METHODS: Twenty-four caregivers of community-dwelling Veterans with dementia participated in semi-structured interviews. Questions gathered perceived facilitators and barriers to in-home video telehealth for dementia management through experience with related technology. Transcripts were analyzed using directed content analysis which was guided by factors previously identified as influencing older adults' adoption of technology. RESULTS: Caregiver experience with related technology was mostly facilitative to video telehealth, which was thought best suited for follow-up care. Increased access and decreased patient-caregiver stress were potential benefits. Barriers included perceived limitations of video and the belief that persons with dementia would have limited ability to manage technological aspects and to engage in video telehealth on their own. CONCLUSIONS: This study improves our understanding of the factors that caregivers perceive as barriers and facilitators to in-home video telehealth for dementia management. CLINICAL IMPLICATIONS: Strategies to optimize video telehealth include capitalizing on caregivers' social network and providing targeted training.

Findings and recommendations from the organ transplant caregiver initiative: Moving clinical care and research forward.

Lay-caregivers are essential to the continuum of care in adult organ transplantation. However, we have a limited understanding of the experiences, exigencies, and outcomes associated with lay-caregiving for organ transplant patients. While much discussion and debate has focused on caregiver requirements in relation to transplant candidate selection, little focus has been given to understanding the needs of caregivers themselves. In response to this, the Organ Transplant Caregiver Initiative was created, and a meeting was held during October 6-7, 2019. Transplant healthcare professionals, researchers, and lay-caregivers discussed the experiences, educational needs, existing research, and research recommendations to improve the experience of lay-caregivers for adult organ transplant patients. In this report, we summarize the Organ Transplant Caregiver Initiative and meeting findings, providing a preliminary action plan to improve education, research, and advocacy for organ transplant caregivers.

Patient Education for Kidney Failure Treatment: A Mixed-Methods Study.

RATIONALE & OBJECTIVE: Education programs are needed for people with advanced chronic kidney disease to understand kidney failure treatment options and participate in shared decision-making (SDM). Little is known about the content and accessibility of current education programs or whether they support SDM. STUDY DESIGN: Stakeholder-engaged, mixed-methods design incorporating qualitative observations and interviews, and a quantitative content analysis of slide presentations. SETTING & PARTICIPANTS: Four sites located in Boston, Chicago, Portland (Maine), and San Diego. ANALYTICAL APPROACH: Thematic analysis based on the Ottawa Framework (observations and interviews) and descriptive statistical analysis (slide presentations). RESULTS: Data were collected from observations of 9 education sessions, 5 semistructured interviews with educators, and 133 educational slide presentations. Sites offered group classes or one-on-one sessions. Development, quality, and accuracy of educational materials varied widely. Educators emphasized dialysis (often in-center hemodialysis), with little mention of conservative management. Educators reported patients were often referred too late to education sessions and that some patients become overwhelmed if they learn of the implications of kidney failure in a group setting. Commonly, sessions were general and did not provide opportunities for tailored information most supportive of SDM. Few nephrologists were involved in education sessions or aware of the educational content. Content gaps included prognosis, decision support, mental health and cognition, advance care planning, cost, and diet. Slide presentations used did not consistently reflect best practices related to health literacy. LIMITATIONS: Findings may not be broadly generalizable. CONCLUSIONS: Education sessions focused on kidney failure treatment options do not consistently follow best practices related to health literacy or for supporting SDM. To facilitate SDM, the establishment of expectations for kidney failure treatment options should be clearly defined and integrated into the clinical workflow. Addressing content gaps, health literacy, and communication with nephrologists is necessary to improve patient education in the setting of advanced chronic kidney disease.