Financial impact of integrated specialty pharmacy efforts to avoid oral anticancer medication waste.

BACKGROUND: The growing number of oral anticancer medications represents a significant portion of pharmacy spending and can be costly for patients. Patients taking oral anticancer medications may experience frequent treatment changes following necessary safety and effectiveness monitoring, often resulting in medication waste. Strategies to avoid medication waste could alleviate the financial burden of these costly therapies on the payer and the patient. OBJECTIVE: To evaluate the impact on waste and cost avoidance of reviewing the amount of medication patients have on hand and the presence of upcoming follow-up (ie, provider visit, laboratory testing, or imaging) before requesting a prescription refill renewal for patients taking oral anticancer medications through an integrated health system specialty pharmacy. METHODS: We performed a retrospective review of patients filling oral anticancer medications prescribed by a Vanderbilt University Medical Center provider and dispensed by Vanderbilt Specialty Pharmacy between January 1, 2020, and December 31, 2020. Specialty pharmacists received a system-generated refill renewal request for oral anticancer medications when the final prescription refill was dispensed, prompting the pharmacist to review the patient's medical record for continued therapy appropriateness and to request a new prescription. If the patient had a sufficient supply on hand to last until an upcoming follow-up (ie, provider visit, imaging, or laboratory assessment), the pharmacist postponed the renewal until after the scheduled follow-up. Patients were included in the analysis if the refill renewal request was postponed after review of the amount of medication on hand and the presence of an upcoming follow-up. Medication outcomes (ie, continued, dose changed, held, medication changed to a different oral anticancer medication, or discontinued) resulting from the follow-up were collected. Cost avoidance in US dollars was assigned based on the outcome of follow-up by calculating the price per unit times the number of units that would have been unused or in excess of what was needed if the medication had been dispensed before the scheduled follow-up. The average wholesale price minus 20% (AWP-20%) and wholesale acquisition cost (WAC) were used to report a range of costs avoided over 12 months. RESULTS: The total cost avoidance over 12 months associated with postponing refill renewal requests in a large academic health system with an integrated specialty pharmacy ranged from $549,187.03 using WAC pricing to $751,994.99 using AWP-20% pricing, with a median cost avoidance per fill of $366.04 (WAC) to $1,931.18 (AWP-20%). Refill renewal requests were postponed in 159 instances for 135 unique patients. After follow-up, medications were continued unchanged in only 2% of postponed renewals, 56% of follow-ups resulted in medication discontinuations, 32% in dose changes, 5% in medication changes, and 5% in medication holds. CONCLUSIONS: Integrated health system specialty pharmacist postponement of refill requests after review of the amount of medication on hand and upcoming follow-up proved effective in avoiding waste and unnecessary medication costs in patients treated with oral anticancer medications at a large academic health system.

The Effect of Obesity on Sleep Apnea Pathogenesis Differs in Women vs Men: Multiple Mediation Analyses in the Retrospective SNOOzzzE Cohort.

BACKGROUND AND OBJECTIVE: There are multiple mechanisms underlying obstructive sleep apnea (OSA) development. However, how classic OSA risk factors such as body mass index (BMI) and sex portend to OSA development have not been fully described. Thus, we sought to evaluate how obesity leads to OSA, and assess how these mechanisms differ between men and women. Methods The San Diego Multi-Outcome OSA Endophenotype (SNOOzzzE) cohort includes 3,319 consecutive adults who underwent a clinical in-laboratory polysomnography at the UCSD sleep clinic between 1/2017-12/2019. Using routine polysomnography signals, we determined OSA endotypes. We then performed mediation analyses stratified by sex to determine how BMI influenced apnea hypopnea index (AHI) using OSA endotypic traits as mediators. Results We included 2,146 patients of whom 919 (43%) were women and 1,227 (57%) were obese. BMI was significantly associated with AHI in both women and men. In men, the effect of BMI on AHI was partially mediated by a reduction in upper airway stiffness (31% of total effect, TE), by a reduction in circulatory delay (16%TE), and by an increase in arousal threshold (7%TE). In women, the effect of BMI on AHI was partially mediated by a reduction in circulatory delay (22%TE). Discussion BMI-related OSA pathogenesis differs by sex. An increase in upper airway collapsibility (in men) is consistent with prior studies. A reduction in circulatory delay may lead to shorter and thus more events per hour (i.e., higher AHI), while the association between a higher arousal threshold and higher AHI may reflect reverse causation.

Machine Learning Approaches to Predict Symptoms in People With Cancer: Systematic Review.

BACKGROUND: People with cancer frequently experience severe and distressing symptoms associated with cancer and its treatments. Predicting symptoms in patients with cancer continues to be a significant challenge for both clinicians and researchers. The rapid evolution of machine learning (ML) highlights the need for a current systematic review to improve cancer symptom prediction. OBJECTIVE: This systematic review aims to synthesize the literature that has used ML algorithms to predict the development of cancer symptoms and to identify the predictors of these symptoms. This is essential for integrating new developments and identifying gaps in existing literature. METHODS: We conducted this systematic review in accordance with the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) checklist. We conducted a systematic search of CINAHL, Embase, and PubMed for English records published from 1984 to August 11, 2023, using the following search terms: cancer, neoplasm, specific symptoms, neural networks, machine learning, specific algorithm names, and deep learning. All records that met the eligibility criteria were individually reviewed by 2 coauthors, and key findings were extracted and synthesized. We focused on studies using ML algorithms to predict cancer symptoms, excluding nonhuman research, technical reports, reviews, book chapters, conference proceedings, and inaccessible full texts. RESULTS: A total of 42 studies were included, the majority of which were published after 2017. Most studies were conducted in North America (18/42, 43%) and Asia (16/42, 38%). The sample sizes in most studies (27/42, 64%) typically ranged from 100 to 1000 participants. The most prevalent category of algorithms was supervised ML, accounting for 39 (93%) of the 42 studies. Each of the methods-deep learning, ensemble classifiers, and unsupervised ML-constituted 3 (3%) of the 42 studies. The ML algorithms with the best performance were logistic regression (9/42, 17%), random forest (7/42, 13%), artificial neural networks (5/42, 9%), and decision trees (5/42, 9%). The most commonly included primary cancer sites were the head and neck (9/42, 22%) and breast (8/42, 19%), with 17 (41%) of the 42 studies not specifying the site. The most frequently studied symptoms were xerostomia (9/42, 14%), depression (8/42, 13%), pain (8/42, 13%), and fatigue (6/42, 10%). The significant predictors were age, gender, treatment type, treatment number, cancer site, cancer stage, chemotherapy, radiotherapy, chronic diseases, comorbidities, physical factors, and psychological factors. CONCLUSIONS: This review outlines the algorithms used for predicting symptoms in individuals with cancer. Given the diversity of symptoms people with cancer experience, analytic approaches that can handle complex and nonlinear relationships are critical. This knowledge can pave the way for crafting algorithms tailored to a specific symptom. In addition, to improve prediction precision, future research should compare cutting-edge ML strategies such as deep learning and ensemble methods with traditional statistical models.

Prediction of Cancer Symptom Trajectory Using Longitudinal Electronic Health Record Data and Long Short-Term Memory Neural Network.

PURPOSE: Ability to predict symptom severity and progression across treatment trajectories would allow clinicians to provide timely intervention and treatment planning. However, such predictions are difficult because of sparse and inconsistent assessment, and simplistic measures such as the last observed symptom severity are often used. The purpose of this study is to develop a model for predicting future cancer symptom experiences on the basis of past symptom experiences. PATIENTS AND METHODS: We performed a retrospective, longitudinal analysis using records of patients with cancer (n = 208) hospitalized between 2008 and 2014. A long short-term memory (LSTM)-based recurrent neural network, a linear regression, and random forest models were trained on previous symptoms experienced and used to predict future symptom trajectories. RESULTS: We found that at least one of three tested models (LSTM, linear regression, and random forest) outperform predictions based solely on the previous clinical observation. LSTM models significantly outperformed linear regression and random forest models in predicting nausea (P < .1) and psychosocial status (P < .01). Linear regression outperformed all models when predicting oral health (P < .01), while random forest outperformed all models when predicting mobility (P < .01) and nutrition (P < .01). CONCLUSION: We can successfully predict patients' symptom trajectories with a prediction model, built with sparse assessment data, using routinely collected nursing documentation. The results of this project can be applied to better individualize symptom management to support cancer patients' quality of life.

Social Determinants of Health and Cancer Pain in the US: Scoping Review.

Social determinants of health (SDOH) are structural factors that yield health inequities. Within the context of cancer, these inequities include screening rates and survival rates, as well as higher symptom burden during and after treatment. While pain is one of the most frequently reported symptoms, the relationship between SDOHs and cancer pain is not well understood. The purpose of this study is to describe and synthesize the published research that has evaluated the relationships between SDOH and cancer pain. A systematic search of PubMed, CINAHL, and Embase was conducted to identify studies in which cancer pain and SDOH were described. In all, 20 studies met the inclusion criteria. In total, 14 studies reported a primary aim related to SDOH and cancer pain. Demographic variables including education or income were used most frequently. Six specific measurements were utilized to measure SDOH, such as the acculturation scale, the composite measure of zip codes for poverty level and blight prevalence, or the segregation index. Among the five domains of SDOH based on Healthy People 2030, social and community was the most studied, followed by economic stability, and education access and quality. The neighborhood and built environment domain was the least studied. Despite increasing attention to SDOH, the majority of published studies use single-dimension variables derived from demographic data to evaluate the relationships between SDOH and cancer pain. Future research is needed to explore the intersectionality of SDOH domains and their impact on cancer pain. Additionally, intervention studies should be conducted to address existing disparities and to reduce the incidence and impact of cancer pain.

Promoting a more diverse and inclusive research workforce through the research scholars program.

BACKGROUND: Novel and comprehensive approaches are needed to address shortcomings in the diversity and inclusiveness of the scientific workforce. In response to this need and informed by multiple programs and data sources, we created the Research Scholars Program (RSP). The RSP is a yearlong program for early-career faculty with an overall objective to overcome barriers to the academic success, retention, progression, and promotion of groups underrepresented in biomedical and behavioral research. The goal of the RSP is to increase research confidence and productivity, build a supportive research community, and reduce isolation by providing personal and group research enrichment to junior faculty through professional development, mentorship, and networking. METHODS: We adapted evidence-based approaches for our institutional context and vetted the RSP across our campus. The resulting RSP consists of three main elements: (1) five levels of Mosaic Mentorship; (2) group and tailored professional development programming; and (3) scientific and social networking. To determine the potential of the RSP to improve research confidence critical to success, we used a modified shortened version of the Clinical Research Appraisal Inventory (CRAI-12) to assess participants' confidence in performing a variety of research tasks before and after program participation. We collected information about retention, promotion, and grants submitted and awarded. Additionally, we conducted semi-structured exit interviews with each scholar after program participation to identify programmatic strengths and areas for improvement. Data for Cohorts 1 and 2 (N = 12) were analyzed. RESULTS: Our assessment finds, with one exception, increasing confidence in participants' research skills across all items, ranging from 0.4 (4.7%) to 2.6 (40.6%). In their exit interviews, the Research Scholars (RS) described their improved productivity and increased sense of belonging and support from others. Research Scholars noted numerous components of the RSP as strengths, including the Mosaic Mentorship model, professional development programming, and opportunities for both informal and formal interactions. Respondents identified time pressure, a lack of feedback, and unclear expectations of the various mentorship roles as areas in which the program can improve. CONCLUSION: Preliminary findings indicate that the RSP is successful in building the research confidence of underrepresented and disadvantaged early-career faculty. While this report focuses on the development and protocol of the RSP, additional cohorts and data will provide the evidence base to support dissemination as a national model of research professional development. Such programming is critical to ensure sustainable support structures, institutional networks, infrastructure, and resources that will improve discovery and equity through inclusive excellence.

A survey of genetic and palliative care health professionals' views of integrating genetics into palliative care.

Genetic counselling and testing have utility for people with palliative care needs and their families. However, genetic and palliative care health professionals have described difficulties initiating palliative-genetic discussions. Between March and July 2022, we received n = 73 surveys (6% response rate) from genetic and palliative care health professionals in Australia and New Zealand that assessed and compared barriers and facilitators. The main perceived barrier to both groups was palliative care health professionals' lack of genetic knowledge (44%). Most palliative care health professionals were 'not at all confident' performing several activities, including discussing DNA banking (52%) and knowing their legal responsibilities when sharing genetic information (58%). The most frequently selected facilitator for genetic health professionals was fostering close relationships with palliative care health professionals (52%), while palliative care health professionals indicated a genetic referral template (51%) would be of assistance. Almost all participants agreed genetic discussions do not undermine the central ethos of palliative care (87%). Fewer palliative care health professionals considered themselves well situated to have genetic discussions with a palliative patient's family compared to genetic health professionals (p = 0.014). Our results suggest that genetic and palliative care health professionals support integrating genetics into palliative care, although refinement of the palliative care health professionals' role in this process is required. We have identified intervention targets to overcome barriers related to knowledge and confidence, which ought to be integrated into future interventions designed to support health professionals deliver the benefits of genetic information to people with palliative care needs and their families.

Preliminary Analysis of Gut Microbiome and Gastrointestinal Symptom Burden in Breast Cancer Patients Receiving Chemotherapy Compared to Healthy Controls.

BACKGROUND: Alterations in the naturally occurring bacteria of the gut, known as the gastrointestinal (GI) microbiome, may influence GI symptoms in women with breast cancer. OBJECTIVE: This work aims to describe GI symptom occurrence, duration, severity, and distress and measures of the GI microbiome among women with breast cancer receiving chemotherapy compared to age- and sex-matched healthy controls. INTERVENTIONS/METHODS: 22 women with breast cancer receiving chemotherapy and 17 healthy control women provided stool specimens and GI symptom data using the modified Memorial Symptom Assessment Scale (MSAS). The fecal microbiome was profiled by metagenomic sequencing of 16S Ribosomal RNA (rRNA). GI microbiome was compared between groups using alpha-diversity (Observed OTU number and Shannon index), beta-diversity (UniFrac distances), and relative abundance of select genera. RESULTS: GI symptoms with high symptom reports among breast cancer patients included nausea, diarrhea, flatulence, dry mouth, taste change, and poor appetite. Indices of differential abundance (beta diversity) significantly distinguished between breast cancer patients and healthy controls. Unique bacterial features differentiating the 2 groups were Prevotella_9, Akkermansia, Lachnospira, Lachnospiraceae_NK4A136, Lachnoclostridium, and Oscillibacter. CONCLUSIONS: Gut bacteria are associated with GI inflammation and mucus degradation, suggesting the potential role of the GI microbiome in GI symptom burden. Understanding the influence of GI bacteria on gut health and symptoms will help harness the enormous potential of the GI microbiome as a future diagnostic and therapeutic agent to reduce the symptom burden associated with chemotherapy.

Loop Gain as a Predictor of Blood Pressure Response in Patients Treated for Obstructive Sleep Apnea: Secondary Analysis of a Clinical Trial.

Rationale: Randomized trials have shown inconsistent cardiovascular benefits from obstructive sleep apnea (OSA) therapy. Intermittent hypoxemia can increase both sympathetic nerve activity and loop gain ("ventilatory instability"), which may thus herald cardiovascular treatment benefit. Objectives: To test the hypothesis that loop gain predicts changes in 24-hour mean blood pressure (MBP) in response to OSA therapy and compare its predictive value against that of other novel biomarkers. Methods: The HeartBEAT (Heart Biomarker Evaluation in Apnea Treatment) trial assessed the effect of 12 weeks of continuous positive airway pressure (CPAP) versus oxygen versus control on 24-hour MBP. We measured loop gain and hypoxic burden from sleep tests and identified subjects with a sleepy phenotype using cluster analysis. Associations between biomarkers and 24-h MBP were assessed in the CPAP/oxygen arms using linear regression models adjusting for various covariates. Secondary outcomes and predictors were analyzed similarly. Results: We included 93 and 94 participants in the CPAP and oxygen arms, respectively. Overall, changes in 24-hour MBP were small, but interindividual variability was substantial (mean [standard deviation], -2 [8] and 1 [8] mm Hg in the CPAP and oxygen arms, respectively). Higher loop gain was significantly associated with greater reductions in 24-hour MBP independent of covariates in the CPAP arm (-1.5 to -1.9 mm Hg per 1-standard-deviation increase in loop gain; P ⩽ 0.03) but not in the oxygen arm. Other biomarkers were not associated with improved cardiovascular outcomes. Conclusions: To our knowledge, this is the first study suggesting that loop gain predicts blood pressure response to CPAP therapy. Eventually, loop gain estimates may facilitate patient selection for research and clinical practice. Clinical trial registered with www.clinicaltrials.gov (NCT01086800).

Hierarchical Self-Assembly of Carbon Dots into High-Aspect-Ratio Nanowires.

We report a spontaneous and hierarchical self-assembly mechanism of carbon dots prepared from citric acid and urea into nanowire structures with large aspect ratios (>50). Scattering-type scanning near-field optical microscopy (s-SNOM) with broadly tunable mid-IR excitation was used to interrogate details of the self-assembly process by generating nanoscopic chemical maps of local wire morphology and composition. s-SNOM images capture the evolution of wire formation and the complex interplay between different chemical constituents directing assembly over the nano- to microscopic length scales. We propose that residual citrate promotes tautomerization of melamine surface functionalities to produce supramolecular shape synthons comprised of melamine-cyanurate adducts capable of forming long-range and highly directional hydrogen-bonding networks. This intrinsic, heterogeneity-driven self-assembly mechanism reflects synergistic combinations of high chemical specificity and long-range cooperativity that may be harnessed to reproducibly fabricate functional structures on arbitrary surfaces.

Native Mass Spectrometry Quantitation of α2-3-Linked N-Acetylneuraminic Acid Content of Prostate-Specific Antigen: An Accurate Liquid Biopsy for Clinically Significant Prostate Cancer.

Application of the prostate-specific antigen (PSA) test, which measures PSA levels in blood, is standard in prostate cancer (PCa) screening. However, because PSA levels may be elevated for reasons other than PCa, it leads to high rates of misdiagnosis and overtreatment. Recently, alteration in the N-glycan sialylation of PSA, specifically increased levels of α2-3-linked N-acetylneuraminic acid (α2-3-Neu5Ac or α2-3-sialic acid), was identified as a potential biomarker for clinically significant PCa. Here, we introduce a robust top-down native mass spectrometry (MS) approach, performed using a combination of α2-3-Neu5Ac-specific and nonspecific neuraminidases and employing center-of-mass monitoring (CoMMon), for quantifying the levels of α2-3-Neu5Ac as a fraction of total N-linked Neu5Ac present on PSA extracted from blood serum. To illustrate the potential of the assay for clinical diagnosis and disease staging of PCa, the percentages of α2-3-Neu5Ac on PSA (%α23PSA) in the serum of low-grade (International Society of Urological Pathology Grade Group/GG1), intermediate-grade (GG2), and high-grade (GG3,4,5) PCa individuals were measured. We observed a high sensitivity (85.5%) and specificity (84.6%) for discrimination of GG1 from clinically significant GG2-5 patients when using a %α23PSA test cut-off of 28.0%. Our results establish that the %α23PSA in blood serum PSA, which can be precisely measured in a non-invasive manner with our dual neuraminidase native MS/CoMMon assay, can discriminate between clinically significant PCa (GG2-5) and low-grade PCa (GG1). Such discrimination has not been previously achieved and represents an important clinical need. This assay could greatly improve the standard PSA test and serve as a valuable PCa diagnostic tool.

What's in a name? Justifying terminology for genomic findings beyond the initial test indication: A scoping review.

Genome sequencing can generate findings beyond the initial test indication that may be relevant to a patient or research participant's health. In the decade since the American College of Medical Genetics and Genomics published its recommendations for reporting these findings, consensus regarding terminology has remained elusive and a variety of terms are in use globally. We conducted a scoping review to explore terminology choice and the justifications underlying those choices. Documents were included if they contained a justification for their choice of term(s) related to findings beyond the initial genomic test indication. From 3571 unique documents, 52 were included, just over half of which pertained to the clinical context (n = 29, 56%). We identified four inter-related concepts used to defend or oppose terms: expectedness of the finding, effective communication, relatedness to the original test indication, and how genomic information was generated. A variety of justifications were used to oppose the term "incidental," whereas "secondary" had broader support as a term to describe findings deliberately sought. Terminology choice would benefit from further work to include the views of patients. We contend that clear definitions will improve ethical debate and support communication about genomic findings beyond the initial test indication.

Pharmacokinetics comparison of vardenafil as administered by an intranasal spray formulation vs a 10-mg oral tablet.

BACKGROUND: Oral vardenafil (VDF) tablet is an effective treatment for erectile dysfunction (ED), but intranasal administration with a suitable formulation can lead to a faster onset of action and offer more convenient planning for ED treatment. AIM: The primary purpose of the present pilot clinical study was to determine whether intranasal VDF with an alcohol-based formulation can result in more "user-friendly pharmacokinetics" as compared with oral tablet administration. METHODS: This single-dose randomized crossover study was conducted in 12 healthy young volunteers receiving VDF as a 10-mg oral tablet or 3.38-mg intranasal spray. Multiple blood concentrations were obtained, and VDF concentrations were determined with a liquid chromatography-tandem mass spectrometry assay. Pharmacokinetic parameters following each treatment were compared and adverse events assessed. OUTCOMES: Pharmacokinetic parameters were obtained: apparent elimination rate constant, elimination half-life, peak concentration, peak time, total area under the curve, and relative bioavailability. RESULTS: Although mean apparent elimination rate constant, elimination half-life, peak concentration, and total area under the curve were similar between intranasal and oral administration, the median peak time from intranasal was much shorter (10 vs 58 minutes, P < .001, Mann-Whitney U test). The variability of the pharmacokinetic parameters was also less with intranasal than oral administration. The relative bioavailability of intranasal to oral was 1.67. Intranasal VDF caused transient but tolerable local nasal reactions in 50% of subjects. Other adverse events (eg, headache) were similar between the treatments. The incidence of adverse events was, however, significantly less in the second treatment after initial exposure to VDF. No serious adverse events were noted. CLINICAL IMPLICATIONS: Intranasal VDF potentially offers a more timely and lower dose for the treatment of ED in patients who can tolerate the transient local adverse reactions. STRENGTHS AND LIMITATIONS: The strength of this study is its randomized crossover design. Because the study was conducted in 12 healthy young subjects, the results may not reflect those observed in elderly patients who may be likely taking VDF for ED. Nevertheless, the changes of pharmacokinetic parameters in the present study are likely a reflection of the differences between intranasal and oral administration of the formulations. CONCLUSION: Our study indicated that the present VDF formulation, when administered intranasally, can achieve a more rapid but similar plasma concentration with only about one-third dose when compared with the oral administration.

ARIA treatment benefits are related to severity of dichotic listening deficits in children.

PURPOSE: This study investigated the relationship between dichotic listening (DL) benefits from treatment with Auditory Rehabilitation for Interaural Asymmetry (ARIA) and the severity of DL deficits quantified prior to the onset of treatment. We hypothesized that children with more severe DL deficits would demonstrate greater benefits following ARIA. METHOD: A scale that quantifies deficit severity was applied to dichotic listening scores obtained before and after training with ARIA at multiple clinical sites (n = 92). Using multiple regression analyses, we evaluated the predictive effects of deficit severity on DL outcomes. RESULTS: Results demonstrated that deficit severity can predict benefits from ARIA, as measured by improvements in DL scores in both ears. CONCLUSION: ARIA is an adaptive training paradigm for improving binaural integration abilities in children with DL deficits. The results from this study suggest that children with more severe DL deficits achieve greater benefits from ARIA and that a severity scale may provide important clinical information for recommending intervention.

Expanding the Australian Newborn Blood Spot Screening Program using genomic sequencing: do we want it and are we ready?

Since the introduction of genome sequencing in medicine, the factors involved in deciding how to integrate this technology into population screening programs such as Newborn Screening (NBS) have been widely debated. In Australia, participation in NBS is not mandatory, but over 99.9% of parents elect to uptake this screening. Gauging stakeholder attitudes towards potential changes to NBS is vital in maintaining this high participation rate. The current study aimed to determine the knowledge and attitudes of Australian parents and health professionals to the incorporation of genomic sequencing into NBS programs. Participants were surveyed online in 2016 using surveys adapted from previous studies. The majority of parents (90%) self-reported some knowledge of NBS, with 77% expressing an interest in NBS using the new technology. This was significantly lower than those who would utilise NBS using current technologies (99%). Although, many health professionals (62%) felt that new technologies should currently not be used as an adjunct to NBS, 79% foresaw the use of genomic sequencing in NBS by 2026. However, for genomic sequencing to be considered, practical and technical challenges as well as parent information needs were identified including the need for accurate interpretation of data; pre-and post-test counselling; and appropriate parental consent and opt-out process. Therefore, although some support for implementing genomic sequencing into Australian NBS does exist, there is a need for further investigation into the ethical, social, legal and practical implications of introducing this new technology as a replacement to current NBS methods.

A qualitative exploration of goals-of-care discussions with seriously ill patients in Jordan.

OBJECTIVES: This study aims to explore seriously ill patients' experiences during goals-of-care discussions and perspectives of end-of-life (EOL) decision-making in the Middle Eastern country of Jordan. METHODS: This is a qualitative descriptive study with semi-structured, one-on-one interviews. Settings were 2 large hospitals in Jordan. Patients were a purposeful sample of 14 Arabic-speaking adults who were seriously ill and hospitalized with palliative care needs. RESULTS: Conventional content analysis identified 4 main themes: perceived suffering during serious illness, attitudes toward discussing EOL decision-making, goals of care and preferences for EOL, and actions to enhance EOL decision-making. Disease and treatment burdens and concerns about life, family, and death were sources of suffering during serious illness. What matters most to patients at EOL were alleviating suffering and getting support from family, friends, and care providers. Although patients expressed reluctance and inaction toward EOL decision-making due to uncertainties, lacking awareness, and assumptions of fear, their potential goals of care were to live longer, be with their families, and die with dignity. SIGNIFICANCE OF RESULTS: Jordanians and culturally similar Arabs could benefit from goals-of-care discussions. The proper, culturally sensitive implementation of goals-of-care discussions in Arab populations with similar cultural norms requires raising public awareness and clarifying the legitimacy of goals-of-care discussions, preparing patients and their families for the discussions, and considering individual variations in handling the discussions.

Mental toll on working women during the COVID-19 pandemic: An exploratory study using Reddit data.

COVID-19 has led to an unprecedented surge in unemployment associated with increased anxiety, stress, and loneliness impacting the well-being of various groups of people (based on gender and age). Given the increased unemployment rate, this study intends to understand if the different dimensions of well-being change across age and gender. By quantifying sentiment, stress, and loneliness with natural language processing tools and one-way, between-group multivariate analysis of variance (MANOVA) using Reddit data, we assessed the differences in well-being characteristics for age groups and gender. We see a noticeable increase in the number of mental health-related subreddits for younger women since March 2020 and the trigger words used by them indicate poor mental health caused by relationship and career challenges posed by the pandemic. The MANOVA results show that women under 30 have significantly (p = 0.05) higher negative sentiment, stress, and loneliness levels than other age and gender groups. The results suggest that younger women express their vulnerability on social media more strongly than older women or men. The huge disruption of job routines caused by COVID-19 alongside inadequate relief and benefit programs has wrecked the economy and forced millions of women and families to the edge of bankruptcy. Women had to choose between being home managers and financial providers due to the countrywide shutdown of schools and day-cares. These findings open opportunities to reconsider how policy supports women's responsibilities.

Palliative Care and End-of-Life Outcomes in Patients Considered for Liver Transplantation: A Single-Center Experience in the US Midwest.

Introduction: Previous research has shown limited palliative care (PC) utilization among patients evaluated for liver transplantation (LT) despite the cohort's significant symptom burden, high frequency of hospitalization and risk of rapid decompensation. Our aim was to evaluate patient characteristics and end-of-life (EOL) outcomes (i.e. ICU utilization, code status, advance care planning) associated with the use of PC services in patients who were evaluated for LT. Methods: We performed a single-center cross-sectional study comprised of 223 deceased patients evaluated for LT between 1/1/2017 and 12/31/2021. We evaluated demographic characteristics and EOL outcomes for differences between patients who received PC consultation and those who did not. EOL outcomes associated with PC use were assessed using logistic and linear regression analysis adjusted for patient demographics. Results: Patients who received PC consultation were younger (mean 57 vs. 61; P = 0.048), had higher Model for end-stage Liver Disease (MELD) scores (27.5 vs. 22; P = 0.001), higher rates of hepatic encephalopathy (96% vs. 84%, P = 0.005), and were more frequently declined for LT (77% vs. 57%; P = 0.008). Patients who received PC services were less likely to die in the ICU (OR = 0.07 [0.02-0.18]) and were more likely to have documented advance care planning (OR = 3.16 [1.47-6.97]), family meetings (OR = 6.58 [2.72-17.08]), and goals-of-care discussions (OR = 14.83 [4.39-69.29]). Conclusion: For patients being evaluated for LT, PC utilization differed based on demographics, disease complications and severity, and transplant status. Those who received PC services had higher quality EOL care planning and fewer ICU admissions.

Approaching discussions about genetics with palliative patients and their families: a qualitative exploration with genetic health professionals.

Genetic information can provide clinical benefits to families of palliative patients. However, integration of genetics into mainstream medicine has not focused on palliative populations. We explored the views and experiences of genetic health professionals in addressing genetics with palliative patients, and their families. We conducted an interpretive descriptive qualitative study with genetic counsellors and clinical geneticists using interviews and focus groups. Findings were generated using reflexive thematic analysis. Three themes were identified: (1) Focusing on the benefit to the family, (2) The discomfort of addressing genetics near end-of-life and (3) "It's always on the back-burner": Challenges to getting genetics on the palliative care agenda. Participants discussed the familial benefit of genetics in palliative care alongside the challenges when patients are near end-of-life. They perceived genetics as low priority for palliative care due to misunderstandings related to the value of genetic information. Acknowledging the challenges in the palliative care context, genetic health professionals want improved service leadership and awareness of the familial benefits of palliative genetic testing. Strong leadership to support genetic health professionals in addressing these barriers is needed for the benefits of genetic information to be realised.