Access to transplantation for persons with intellectual disability: Strategies for nondiscrimination.

Disqualifying patients with intellectual disabilities (ID) from transplantation has received growing attention from the media, state legislatures, the Office of Civil Rights, and recently the National Council on Disability, as well as internationally. Compared with evidence-based criteria used to determine transplant eligibility, the ID criterion remains controversial because of its potential to be discriminatory, subjective, and because its relationship to outcomes is uncertain. Use of ID in determining transplant candidacy may stem partly from perceived worse adherence and outcomes for patients with ID, fear of penalties to transplant centers for poor outcomes, and stigma surrounding the quality of life for people with ID. However, using ID as a contraindication to solid organ transplantation is not evidence-based and reduces equitable access to transplantation, disadvantaging an already vulnerable population. Variability and lack of transparency in referral and evaluation allows for gatekeeping, threatens patient autonomy, limits access to lifesaving treatment, and may be seen as unfair. We examine the benefits and harms of using ID as a transplant eligibility criterion, review current clinical evidence and ethical considerations, and make recommendations for transplant teams and regulatory agencies to ensure fair access to transplant for individuals with ID.

Changes in the investigation and management of suspected myocardial infarction and injury during COVID-19: a multi-centre study using routinely collected healthcare data.

Objective: The COVID-19 pandemic was associated with a reduction in the incidence of myocardial infarction (MI) diagnosis, in part because patients were less likely to present to hospital. Whether changes in clinical decision making with respect to the investigation and management of patients with suspected MI also contributed to this phenomenon is unknown. Methods: Multicentre retrospective cohort study in three UK centres contributing data to the National Institute for Health Research Health Informatics Collaborative. Patients presenting to the Emergency Department (ED) of these centres between 1st January 2020 and 1st September 2020 were included. Three time epochs within this period were defined based on the course of the first wave of the COVID-19 pandemic: pre-pandemic (epoch 1), lockdown (epoch 2), post-lockdown (epoch 3). Results: During the study period, 10,670 unique patients attended the ED with chest pain or dyspnoea, of whom 6,928 were admitted. Despite fewer total ED attendances in epoch 2, patient presentations with dyspnoea were increased (p < 0.001), with greater likelihood of troponin testing in both chest pain (p = 0.001) and dyspnoea (p < 0.001). There was a dramatic reduction in elective and emergency cardiac procedures (both p < 0.001), and greater overall mortality of patients (p < 0.001), compared to the pre-pandemic period. Positive COVID-19 and/or troponin test results were associated with increased mortality (p < 0.001), though the temporal risk profile differed. Conclusions: The first wave of the COVID-19 pandemic was associated with significant changes not just in presentation, but also the investigation, management, and outcomes of patients presenting with suspected myocardial injury or MI.

Establishing a colorectal cancer research database from routinely collected health data: the process and potential from a pilot study.

OBJECTIVE: Colorectal cancer is a common cause of death and morbidity. A significant amount of data are routinely collected during patient treatment, but they are not generally available for research. The National Institute for Health Research Health Informatics Collaborative in the UK is developing infrastructure to enable routinely collected data to be used for collaborative, cross-centre research. This paper presents an overview of the process for collating colorectal cancer data and explores the potential of using this data source. METHODS: Clinical data were collected from three pilot Trusts, standardised and collated. Not all data were collected in a readily extractable format for research. Natural language processing (NLP) was used to extract relevant information from pseudonymised imaging and histopathology reports. Combining data from many sources allowed reconstruction of longitudinal histories for each patient that could be presented graphically. RESULTS: Three pilot Trusts submitted data, covering 12 903 patients with a diagnosis of colorectal cancer since 2012, with NLP implemented for 4150 patients. Timelines showing individual patient longitudinal history can be grouped into common treatment patterns, visually presenting clusters and outliers for analysis. Difficulties and gaps in data sources have been identified and addressed. DISCUSSION: Algorithms for analysing routinely collected data from a wide range of sites and sources have been developed and refined to provide a rich data set that will be used to better understand the natural history, treatment variation and optimal management of colorectal cancer. CONCLUSION: The data set has great potential to facilitate research into colorectal cancer.

Impact of the COVID-19 pandemic on routine surveillance for adults with chronic hepatitis B virus (HBV) infection in the UK.

Background: To determine the impact of the COVID-19 pandemic on the population with chronic Hepatitis B virus (HBV) infection under hospital follow-up in the UK, we quantified the coverage and frequency of measurements of biomarkers used for routine surveillance (alanine transferase [ALT] and HBV viral load). Methods: We used anonymized electronic health record data from the National Institute for Health Research (NIHR) Health Informatics Collaborative (HIC) pipeline representing five UK National Health Service (NHS) Trusts. Results: We report significant reductions in surveillance of both biomarkers during the pandemic compared to pre-COVID-19 years, both in terms of the proportion of patients who had ≥1 measurement annually, and the mean number of measurements per patient. Conclusions: These results demonstrate the real-time utility of HIC data in monitoring health-care provision, and support interventions to provide catch-up services to minimise the impact of the pandemic. Further investigation is required to determine whether these disruptions will be associated with increased rates of adverse chronic HBV outcomes.

Father-Adolescent Conflict and Adolescent Symptoms: The Moderating Roles of Father Residential Status and Type.

OBJECTIVE: The purpose of this study was to examine if the longitudinal associations between father-adolescent conflict and both externalizing and internalizing symptoms in youth were moderated by fathers' residential status (i.e., whether or not he lived in the home) and type of residential father (i.e., biological or step). METHODS: Adolescents (N = 146) completed a measure about conflict with their father or stepfather in 8th and 9th grade. At the same time points, mothers completed measures about the youths' externalizing and internalizing symptoms. RESULTS: The association between 8th grade conflict and 9th grade externalizing symptoms was moderated by fathers' residential status. Conflict with fathers in 8th grade was positively associated with 9th grade externalizing symptoms when youths resided with their father (biological and stepfathers were included); in contrast, higher levels of father-adolescent conflict were associated with lower levels of subsequent externalizing symptoms when fathers did not live with the youth. Externalizing symptoms in 8th grade did not significantly predict father-adolescent conflict in grade 9. Regarding internalizing symptoms, the association between father-adolescent conflict in 8th grade and internalizing symptoms in 9th grade was moderated by father's residential status; conflict predicted higher levels of internalizing symptoms when the biological father lived elsewhere. Higher levels of 8th grade internalizing symptoms also significantly predicted greater conflict between adolescents and their fathers in 9th grade for residential fathers only. CONCLUSIONS: The associations among adolescent emotional and behavioral outcomes and paternal-child relationship qualities vary with symptom type and family structures and, thus, warrant further comprehensive study.

The role of social stressors and interpersonal orientation in explaining the longitudinal relation between externalizing and depressive symptoms.

The authors examined the longitudinal association between externalizing and depressive symptoms using a sample of 185 young adolescents whose mothers had histories of depression. The relation between externalizing behaviors in 6th grade and depressive symptoms a year later was partially mediated by dependent social stressors. Moreover, consistent with the personality-event congruence hypothesis, this mediation model was particularly true for children with high levels of interpersonal orientation (Neediness and Connectedness). In contrast, social stressors that were judged to be independent of the children's behavior, as well as both dependent and independent nonsocial stressors, did not mediate the longitudinal relation between externalizing and depressive symptoms.