People at Centre Stage: evaluation summary report

This report presents the results of an evaluation of consumer-directed community aged care. Consumer-Directed Care (CDC) is central to the aim of rendering community aged care more flexible and responsive. In Australia, it builds on experiences of consumer-directed community-based disability care and is intended to offer greater decisional authority to care recipients over the services they receive. Since the 1990s, there has been growing interest among Australian community care providers, service users, and policy makers to ‘modernise’ and reform community aged care. A suite of reports were commissioned that highlighted the facts that: fragmented programme arrangements in community care create planning and operational difficulties and inefficiencies; the service provision model is too complex, making it difficult for lay people to access the services they need or are entitled to; funding gaps exist throughout the care pathways; the system is inflexible and unresponsive to transitions in people’s lives and/or illness trajectories; the needs of a significant minority of care recipients are not sufficiently addressed, resulting in poor quality of care as well as resource wastage. The People at Centre Stage (PACS) project aimed to address some of these issues. The aim of the project was to—within the limitations of current legislation and guidelines—develop, implement and evaluate a community aged care model that gives care recipients with more complex needs the option to have as much control of their own care as they aspire to and feel comfortable with. The project intended to offer a continuum of care ranging from customary case management to CDC. This summary report provides a brief outline of the results of this evaluation. It is structured in two parts: following a brief overview of the PACS model, Part 1 outlines the key findings from the quantitative analysis, while Part 2 offers an overview of the qualitative findings. Part 2 deals exclusively with the experience of people participating in the intervention group

Self-directed community aged care for people with complex needs: a literature review

This report critically reviews the literature on older care recipient‐directed care arrangements in the United States, United Kingdom, and Australia and highlights the importance to distinguish between Cash‐for‐Care and Self‐Directed Care schemes. Cash‐for‐ Care schemes typically involve the handing out of cash payments or vouchers to enable care recipients to purchase their own care instead of receiving in‐kind help at home. Ideally, Self‐Directed Care programs, on the other hand, are more holistic, care outcome focused and allow participants to choose among a continuum of care ranging from traditional case management approaches to cash options. Most of the reviewed literature focuses on Cash‐for‐Care schemes. However, as the more recent research suggests, Cash‐for‐Care programs may not provide the kind of choice that resonates with the preferences of many older people. Indeed, with the exception of Cash‐for‐Care schemes in California and Washington, programs were primarily aimed at and designed for people with disabilities. Most research indicates that Cash‐for‐Care programs generate either similar or better outcomes, especially in the domains of service satisfaction and self‐determination, with marginal detectable increase in risk, when compared with traditional agency‐directed services. Yet, the research also indicates that positive outcomes are directly linked to appropriate user supports. Care recipients who hire family members as carers derive extra benefit in terms of safety and service satisfaction

Posterior cricoid region fluoroscopic findings: the posterior cricoid plication.

The region posterior to the cricoid cartilage is challenging to assess fluoroscopically. The purpose of this investigation is to critically evaluate the posterior cricoid (PC) region on fluoroscopy and describe patterns of common findings. This was a case control study. All fluoroscopic swallowing studies performed between June 16, 2009, and February 9, 2010, were reviewed for features seen in the PC region. These findings were categorized into distinct patterns and compared to fluoroscopic studies performed in a cohort of normal volunteers. Two hundred patient studies and 149 healthy volunteer studies were reviewed. The mean age of the referred patient cohort and the volunteer cohort was 57 years (±19) and 61 years (±16), respectively (p > 0.05). The patient cohort was 53% male and the control cohort was 56% female (p > 0.05). Four groups were identified. Pharyngoesophageal webs were seen in 7% (10/149) of controls and 14% (28/200) of patients (p = 0.03). A PC arch impression was seen in 16% of patients (32/200) and controls (24/149) (p = 1). A PC plication was demonstrated in 23% (34/149) of controls and 30% (60/200) of patients (p = 0.13). No distinctive PC region findings were seen in 54% (81/149) of controls and 42% (84/200) of referred patients (p = 0.02). Four patients (2%) had both a web and a PC plication. Four categories of PC region findings were identified (unremarkable PC region, web, PC arch impression, and PC plication). Both patients referred for swallowing studies and healthy volunteers demonstrated esophageal webs, PC arch impressions, and PC plications. Only webs were more common in patients than in control subjects (p = 0.03). The PC impression and PC plication are likely to represent normal variants that may be identified on fluoroscopic swallow studies

Parents’ and children's views of wider genomic testing when used as part of newborn screening to identify cystic fibrosis

Newborn bloodspot screening (NBS) is currently undergoing a ‘revolution’ (Spiekerkoetter et al., 2023). The development of new therapies (Vockley et al., 2023) and the piloting of whole genome sequencing in healthy newborns (e.g. Newborn Genomes Programme, UK, BabySeq USA) are challenging NBS practice and policy, as well as the Wilson & Jungner criteria (Wilson & Jungner, 1968) that underpin them (Andermann et al., 2008; Rahimzadeh et al., 2022; Vears et al., 2023). The capacity to screen for large numbers of variants simultaneously and generate data with potential relevance across the life course, and for family members beyond the screened infant, has prompted widespread discussion of the benefits (e.g., early identification and treatment of screened conditions) and harms (e.g., identification of variants of unknown clinical significance) that such high throughput screening programmes bring (Bick et al., 2022; Remec et al., 2021; Spiekerkoetter et al., 2023; Tluczek et al., 2022)

Helping Psych Students Understand Their Employable Skill Set

Introduction Psychology students are underemployed after graduation despite being a part of one of the largest majors nationwide (Burning Glass Technologies, 2018; The Ladders, 2019; National Center for Education Statistics, 2019). In order to remedy this, our study will investigate how many and which careers psychology students are minimally qualified for. We hypothesize the knowledge skills and abilities (KSAOs) psychology students obtain during their undergraduate career will ensure they are minimally qualified for a wide range of careers across industries after graduation. Methods and Analyses In the previous stage of our research project (Todd et al., 2021), we compiled and validated a list of 42 KSAOs psychology students gained from their undergraduate curriculum by interviewing subject matter experts (i.e., faculty) via Qualtrics on the level of each KSAO obtained by a C student in a psychology class using a 1-7 Likert scale. In this stage, we will use those KSAO level scores in conjunction with O*Net data on the KSAOs necessary to perform a job to identify roles psychology students are minimally qualified for meaning they meet most, 80%, of the job requirements. Our analyses will involve compiling the KSAOs a student has from the courses they’ve taken and ranking their level of each KSAO on the highest level obtained (e.g. two courses with the same KSAO but different levels of expertise). That list of KSAOs will then be compared against O*Nets database of KSAO requirements for careers. Individuals will be returned a list of careers in which 80% of the required KSAOs for those careers match with those they obtained through their coursework. Expected Results and Implications We expect to confirm our hypothesis that the KSAOs psychology students obtain during their undergraduate career will make them minimally eligible for a range of careers across industries. The implications of this finding reside in its use with the website we plan to launch, Eugene. This program will allow psychology students to insert a list of classes and return the KSAOs they have and to which level and the careers correlated with those KSAOs. This will help students grasp a broader understanding of their competencies as well as careers they are eligible for

Fluoroscopic Surrogate for Pharyngeal Strength: The Pharyngeal Constriction Ratio (PCR)

The pharyngeal constriction ratio (PCR), derived directly from videofluoroscopy without the need for manometry, requires validation as a surrogate for pharyngeal strength. A correlation of −0.70 was previously identified between PCR and pharyngeal clearing pressures (PP) on separate fluoroscopic and manometric studies. As PP increases, PCR decreases. The objective of the current study was to evaluate the correlation between PCR and PP in 25 patients undergoing simultaneous fluoroscopy and pharyngeal manometry. The effect of the manometric catheter on PCR was also investigated. The correlation between the PCR and averaged pharyngeal clearing pressures was −0.72 (p < 0.001). All patients with a PCR > 0.25 had a PP < 60 mmHg. PCR did not differ significantly as a consequence of the manometric catheter. Results suggest the utility of an objective fluoroscopic measure in assessing pharyngeal strength when manometry may not be available or possible

Home and Online Management and Evaluation of Blood Pressure (HOME BP) using a digital intervention in poorly controlled hypertension:Randomised controlled trial

Objective The HOME BP (Home and Online Management and Evaluation of Blood Pressure) trial aimed to test a digital intervention for hypertension management in primary care by combining self-monitoring of blood pressure with guided self-management. Design Unmasked randomised controlled trial with automated ascertainment of primary endpoint. Setting 76 general practices in the United Kingdom. Participants 622 people with treated but poorly controlled hypertension (&gt;140/90 mm Hg) and access to the internet. Interventions Participants were randomised by using a minimisation algorithm to self-monitoring of blood pressure with a digital intervention (305 participants) or usual care (routine hypertension care, with appointments and drug changes made at the discretion of the general practitioner; 317 participants). The digital intervention provided feedback of blood pressure results to patients and professionals with optional lifestyle advice and motivational support. Target blood pressure for hypertension, diabetes, and people aged 80 or older followed UK national guidelines. Main outcome measures The primary outcome was the difference in systolic blood pressure (mean of second and third readings) after one year, adjusted for baseline blood pressure, blood pressure target, age, and practice, with multiple imputation for missing values. Results After one year, data were available from 552 participants (88.6%) with imputation for the remaining 70 participants (11.4%). Mean blood pressure dropped from 151.7/86.4 to 138.4/80.2 mm Hg in the intervention group and from 151.6/85.3 to 141.8/79.8 mm Hg in the usual care group, giving a mean difference in systolic blood pressure of -3.4 mm Hg (95% confidence interval -6.1 to -0.8 mm Hg) and a mean difference in diastolic blood pressure of -0.5 mm Hg (-1.9 to 0.9 mm Hg). Results were comparable in the complete case analysis and adverse effects were similar between groups. Within trial costs showed an incremental cost effectiveness ratio of £11 ($15, €12; 95% confidence interval £6 to £29) per mm Hg reduction. Conclusions The HOME BP digital intervention for the management of hypertension by using self-monitored blood pressure led to better control of systolic blood pressure after one year than usual care, with low incremental costs. Implementation in primary care will require integration into clinical workflows and consideration of people who are digitally excluded. Trial registration ISRCTN13790648.</p

Rapid HIV disease progression following superinfection in an HLA-B*27:05/B*57:01-positive transmission recipient.

BACKGROUND: The factors determining differential HIV disease outcome among individuals expressing protective HLA alleles such as HLA-B*27:05 and HLA-B*57:01 remain unknown. We here analyse two HIV-infected subjects expressing both HLA-B*27:05 and HLA-B*57:01. One subject maintained low-to-undetectable viral loads for more than a decade of follow up. The other progressed to AIDS in < 3 years. RESULTS: The rapid progressor was the recipient within a known transmission pair, enabling virus sequences to be tracked from transmission. Progression was associated with a 12% Gag sequence change and 26% Nef sequence change at the amino acid level within 2 years. Although next generation sequencing from early timepoints indicated that multiple CD8+ cytotoxic T lymphocyte (CTL) escape mutants were being selected prior to superinfection, < 4% of the amino acid changes arising from superinfection could be ascribed to CTL escape. Analysis of an HLA-B*27:05/B*57:01 non-progressor, in contrast, demonstrated minimal virus sequence diversification (1.1% Gag amino acid sequence change over 10 years), and dominant HIV-specific CTL responses previously shown to be effective in control of viraemia were maintained. Clonal sequencing demonstrated that escape variants were generated within the non-progressor, but in many cases were not selected. In the rapid progressor, progression occurred despite substantial reductions in viral replicative capacity (VRC), and non-progression in the elite controller despite relatively high VRC. CONCLUSIONS: These data are consistent with previous studies demonstrating rapid progression in association with superinfection and that rapid disease progression can occur despite the relatively the low VRC that is typically observed in the setting of multiple CTL escape mutants

A large scale hearing loss screen reveals an extensive unexplored genetic landscape for auditory dysfunction

The developmental and physiological complexity of the auditory system is likely reflected in the underlying set of genes involved in auditory function. In humans, over 150 non-syndromic loci have been identified, and there are more than 400 human genetic syndromes with a hearing loss component. Over 100 non-syndromic hearing loss genes have been identified in mouse and human, but we remain ignorant of the full extent of the genetic landscape involved in auditory dysfunction. As part of the International Mouse Phenotyping Consortium, we undertook a hearing loss screen in a cohort of 3006 mouse knockout strains. In total, we identify 67 candidate hearing loss genes. We detect known hearing loss genes, but the vast majority, 52, of the candidate genes were novel. Our analysis reveals a large and unexplored genetic landscape involved with auditory function