A Conceptual Framework and Key Research Questions in Educational Needs of Blood and Marrow Transplantation Patients, Caregivers, and Families.

Patient, caregiver, and family education and support was 1 of 6 key areas of interest identified by the National Marrow Donor Program/Be The Match 2-year project to prioritize patient-centered outcomes research (PCOR) goals for the blood and marrow transplantation (BMT) community. PCOR focuses on research to help patients and their caregivers make informed decisions about health care. Therefore, each area of interest was assigned to a working group with broad representation, including patients, caregivers, and clinicians. Each working group was charged with identifying gaps in knowledge and making priority recommendations for critical research to fill those gaps. The report from this working group presents a conceptual framework to address gaps in knowledge regarding patient and caregiver education in BMT and recommendations for priority research questions on this topic.

Engaging Patients in Setting a Patient-Centered Outcomes Research Agenda in Hematopoietic Cell Transplantation.

The goal of patient-centered outcomes research (PCOR) is to help patients and those who care for them make informed decisions about healthcare. However, the clinical research enterprise has not involved patients, caregivers, and other nonproviders routinely in the process of prioritizing, designing, and conducting research in hematopoietic cell transplantation (HCT). To address this need the National Marrow Donor Program/Be The Match engaged patients, caregivers, researchers, and other key stakeholders in a 2-year project with the goal of setting a PCOR agenda for the HCT community. Through a collaborative process we identified 6 major areas of interest: (1) patient, caregiver, and family education and support; (2) emotional, cognitive, and social health; (3) physical health and fatigue; (4) sexual health and relationships; (5) financial burden; and (6) models of survivorship care delivery. We then organized into multistakeholder working groups to identify gaps in knowledge and make priority recommendations for critical research to fill those gaps. Gaps varied by working group, but all noted that a historical lack of consistency in measures use and patient populations made it difficult to compare outcomes across studies and urged investigators to incorporate uniform measures and homogenous patient groups in future research. Some groups advised that additional pre-emptory work is needed before conducting prospective interventional trials, whereas others were ready to proceed with comparative clinical effectiveness research studies. This report presents the results of this major initiative and makes recommendations by working group on priority questions for PCOR in HCT.

Development and Implementation of a Real-Time Inpatient Palliative Care Screening Process to Promote Earlier Palliative Care Referrals.

Despite the previous development of criteria for palliative screening tools, there remains a lack of validated and practical screening processes for the general hospitalized patient population for everyday clinical use. This quality improvement project's aim was to implement a practical institution-based adult inpatient palliative care screening tool embedded into the electronic medical record with an automated alert process to assist in identifying patients earlier within hospital admission. The project used a preimplementation and postimplementation design and followed the Plan-Do-Study-Act process to measure the effectiveness of the tool and alert process in decreasing time from admission to palliative care referral and impact on referring patterns. During the project period, 1851 palliative care referrals were completed, and minimal difference (0.6%) was noted in the average time from admission to referral preimplementation and postimplementation ( P = .939). There was a 3.7% increase in referrals postimplementation and a shift in referring service patterns ( P = .321). Although the expected outcome of earlier palliative referrals during admissions was not met, the development and implementation of the tool and alert process is a step toward the creation of a standard practical tool for the general hospitalized patient population.

Nonalcoholic steatohepatitis is the most common indication for liver transplantation among the elderly: Data from the United States Scientific Registry of Transplant Recipients.

As the US population ages, more elderly patients may need liver transplantation. Our aim was to assess recent trends among elderly individuals requiring liver transplant in the United States. Scientific Registry of Transplant Recipients data (2002-2020) were used to select elderly (≥65 years) liver transplant candidates and assess on-list and posttransplant outcomes. During the study period, 31,209 liver transplant candidates ≥65 years were wait listed. Common etiologies included nonalcoholic steatohepatitis (NASH; 31%), hepatitis C (23%), and alcoholic liver disease (18%); 30% also had hepatocellular carcinoma (HCC). Over time, the proportion of patients ≥65 years among all adult liver transplant candidates increased from 9% (2002-2005) to 23% (2018-2020) (trend, p < 0.0001). The proportion of NASH among elderly candidates increased from 13% (2002-2005) to 39% (2018-2020). Of the elderly candidates, 54% eventually received transplants. In multivariate analysis, independent predictors of a higher chance of receiving a transplant for the elderly included more recent years of listing, male sex, higher Model for End-Stage Liver Disease (MELD) score, and HCC (all p < 0.01). Posttransplant mortality in elderly transplant recipients was higher than in younger patients but continued to decrease over time. In multivariate analysis, independent predictors of higher posttransplant mortality for elderly transplant recipients were earlier years of transplantation, older age, male sex, higher MELD score, history of diabetes, retransplantation, and having HCC (all p < 0.01). The proportion of elderly patients in need of liver transplantation in the United States is sharply increasing. NASH is the most common indication for liver transplantation among the elderly. The outcomes of these patients have been improving in the past 2 decades.

Hospice care utilisation among elderly patients who died with hepatocellular carcinoma in the United States.

BACKGROUND & AIMS: The benefits of hospice care in Medicare recipients with hepatocellular carcinoma (HCC) have not been fully evaluated, which we aimed to study. METHODS: We used nationally representative samples of the Medicare beneficiaries in the USA (2011-2016) to assess the impact of hospice care on the outcomes of patients with HCC. Hospice care benefits on the survival time, length of stay (LOS), 30-day readmissions, and daily charges during the last year and month of life were assessed by logistic regression and generalised linear regression. RESULTS: Among 2,230 Medicare beneficiaries with HCC (mean age, 74.9 years; non-Hispanic White 79.1%; male 66.6%), median survival from HCC diagnosis was 68 days; 556 (24.9%) received hospice services; median hospice LOS was 12 days (4-35 days). Hospice users increased from 20.1% to 31.1% over time, driven by enrolment ≤15 days (45.1-59.2%, respectively). In the last year of life, hospice users (vs. no hospice care) had longer median survival time (76.5 vs. 66 days), lower in-hospital mortality (1.1% vs. 25.5%) and lower median daily charges ($951 vs. $1,004) despite more inpatient admissions and higher comorbid diseases. Hospice enrolment was associated with 48.6% reduction in daily charges (95% CI: -54.9% to -41.5%). Longer hospice LOS was associated with lower rates of healthcare utilisation. Patients with chronic liver disease were less likely to enrol in hospice care (odds ratio = 0.18, 95% CI: 0.14-0.24). CONCLUSIONS: Although hospice provides a significant decrease in healthcare utilisation and some benefit in survival, most care is given in the last 2 weeks of life. Efforts to encourage earlier use of hospice services must continue. LAY SUMMARY: The purpose of hospice care is to provide comfort and lessen suffering at the end of life. Hospice care allows one to die outside the hospital environment which is the wish of most people. However, we found that among persons aged 65 years and older who were diagnosed with liver cancer (which has a poor prognosis), only 25% were enrolled in hospice care and the majority used a hospice only in the last weeks of life. This is a disheartening finding as liver cancer patients with longer hospice enrolment had lower costs and improved survival. We suggest that healthcare practitioners consider discussion of palliative and hospice care routinely with patients suffering from liver cancer.

Addressing Pediatric Obesity in Clinic.

There is an epidemic of pediatric obesity in the United States. In most cases, there is an excess in the amount of calories consumed, compared with the amount of calories expended. Numerous body systems are affected by pediatric obesity, with complications varying between boys and girls. Behavioral, genetic, and environmental factors affect the ability of children to avoid becoming obese. Primary care physicians should screen for obesity in children as much as possible. Associated risk factors for obesity should be uncovered. Methods of preventing obesity should be discussed routinely with children and their families. Healthy dietary habits are key, and so are family-oriented interventions, such as eating together at dinnertime. One hour of moderate to vigorous activity daily is recommended for children and adolescents. While pediatric bariatric surgery is an option, there are also numerous nonpharmacological and pharmacological measures available as management for pediatric obesity. Family-based approaches, such as reducing screen time, have been very successful. Non-weight-bearing exercises also help children and adolescents expend calories without causing injury to themselves. Family availability, activity preference, and developmental levels should all be considerations when managing pediatric obesity. Motivational interviewing may also be helpful, especially when customized for each specific patient and family. Clinicians will play an increasing role in terms of identifying, treating, and preventing pediatric obesity; measures that can be done in the clinic should be considered more and more.