DISPLACE Study Shows Poor Quality of Transcranial Doppler Ultrasound for Stroke Risk Screening in Sickle Cell Anemia.

Children with sickle cell anemia (SCA) are at increased risk of stroke when compared to age-based counterparts. The Stroke Prevention Trial in Sickle Cell Anemia (STOP) previously demonstrated that with the use of transcranial Doppler ultrasound (TCD; Sickle Stroke Screen) and chronic red cell transfusion, the risk of stroke risk is reduced by over 90%. The STOP criteria detailed the type and method of measurement required; the time averaged mean maximum velocity (TAMMV). Unfortunately, it has been difficult to adhere to the appropriate TAMMV measurements. The objectives of this study were to assess the quality of TCD and transcranial Doppler imaging (TCDi) reports to determine report quality and accuracy. This is a sub-analysis of the DISPLACE (Dissemination and Implementation of Stroke Prevention Looking at the Care Environment) study. Over 12,000 TCD/TCDi reports were collected during this study from 28 institutions; 391 TCDs were reviewed for this sub-analysis. There was significant variation in which vessels were assessed, the velocities used to define abnormal results, and who was interpreting the scans. In 52% of reports, it was impossible to identify whether the TAMMV was what was measured. Similarly, it was only clear in 42% of reports that the TAMMV was used to interpret the exam as normal/abnormal. Given this inconsistency, we strongly recommend standardization of TCD/TCDi reporting, specialized training for those performing and interpreting the scans in the use of TCD/TCDi in patients with SCA, internal quality assurance, and institutional quality improvement work to ensure appropriate use of this potentially lifesaving technology.

Breaking the Binary: Restriction and reclamation of power among transgender and gender diverse young adults.

Binary gender norms in the U.S. contribute to the systemic marginalization of transgender and gender diverse (TGD) individuals. These norms shape beliefs and assumptions about a TGD young adults; they inform the policies that govern their rights, the settings they occupy, and research conducted about them. Experiences based on binary conceptions of gender may leave TGD young adults feeling disempowered and require they develop resilient strategies to maintain or reclaim power and control over their lives and decisions. The purpose of this study was to explore the mechanisms through which young adults (ages 18 to 24) demonstrate resilience and resist oppressive gender norms. In collaboration with a TGD young adult advisory team, we used a participatory focus group method (Youth GO) to engage TGD participants in critically examining power and powerlessness in the context of their multiple identities and life experiences. Findings revealed distinct mechanisms of power that work to either restrict or restore TGD young adults' power over their identity and autonomy. Mechanisms operated differently as a function of age, race, gender identity, gender presentation, and socio-economic status. Findings point to concrete and actionable policy and practice interventions that would foster validation and inclusion of TGD young adults.

The impact of reduced routine community mental healthcare on people from minority ethnic groups during the COVID-19 pandemic: qualitative study of stakeholder perspectives.

BACKGROUND: Enduring ethnic inequalities exist in mental healthcare. The COVID-19 pandemic has widened these. AIMS: To explore stakeholder perspectives on how the COVID-19 pandemic has increased ethnic inequalities in mental healthcare. METHOD: A qualitative interview study of four areas in England with 34 patients, 15 carers and 39 mental health professionals from National Health Service (NHS) and community organisations (July 2021 to July 2022). Framework analysis was used to develop a logic model of inter-relationships between pre-pandemic barriers and COVID-19 impacts. RESULTS: Impacts were largely similar across sites, with some small variations (e.g. positive service impacts of higher ethnic diversity in area 2). Pre-pandemic barriers at individual level included mistrust and thus avoidance of services and at a service level included the dominance of a monocultural model, leading to poor communication, disengagement and alienation. During the pandemic remote service delivery, closure of community organisations and media scapegoating exacerbated existing barriers by worsening alienation and communication barriers, fuelling prejudice and division, and increasing mistrust in services. Some minority ethnic patients reported positive developments, experiencing empowerment through self-determination and creative activities. CONCLUSIONS: During the COVID-19 pandemic some patients showed resilience and developed adaptations that could be nurtured by services. However, there has been a reduction in the availability of group-specific NHS and third-sector services in the community, exacerbating pre-existing barriers. As these developments are likely to have long-term consequences for minority ethnic groups' engagement with mental healthcare, they need to be addressed as a priority by the NHS and its partners.

'Why are we stuck in hospital?' Barriers to people with learning disabilities/autistic people leaving 'long-stay' hospital: a mixed methods study.

Background: Transforming care so that people with learning disabilities and/or autistic people can receive support at home rather than in hospital settings is a key priority, but progress has been slow. Despite significant national debate, little previous research has engaged directly with people in hospital, their families or front-line staff to understand the issues from their perspectives. Objectives: This research seeks to better understand the experiences of people with learning disabilities and/or autistic people in long-stay hospital settings, their families and front-line staff - using this knowledge to create practice guides and training materials to support new understandings and ways of working. Design: Following a structured review of the literature, we sought to work with up to 10 people with learning disabilities and/or autistic people in three case-study sites (2021-22), supplementing this with interviews with family members and commissioners; interviews/focus groups with hospital staff, social workers, advocates and care providers; information from case files; and observations of multidisciplinary meetings. Setting: Three 'long-stay' hospital settings in England. Participants: Twenty-seven people in hospital, together with families, health and social care staff and commissioners. Results: • People in hospital report widespread frustration, feel that hospital environments are not conducive to getting/staying well, and face multiple barriers to leaving hospital. Without someone to fight for them, people struggle to overcome the inertia built into our current systems and processes. • Front-line staff are equally frustrated and describe a complex and seemingly dysfunctional system which they find almost impossible to navigate. • Hospital staff from different professional backgrounds do not have a shared sense of how many people really need to be in hospital or how many people could be cared for in different settings - suggesting that different definitions, world views and professional judgements might be at play. • Hospital staff are frustrated about what they see as the difficulty of discharging people into community services, while community services are equally frustrated about what they see as a risk-averse approach which they feel can lack an up-to-date knowledge of what is possible to achieve in the community. • Despite over a decade of policy attempts to resolve these issues, very significant barriers remain. Limitations: This research explored the experiences of a small number of people, but has done so in significant depth. The research was undertaken in secure settings, during COVID and in a difficult external policy and practice context, and so has had to be very flexible and empathetic in order to build relationships and make the research possible. Future research could helpfully consider the needs of people from black and minority ethnic communities, the extent to which the experiences of people on forensic pathways are similar to/different from other people's experiences (including perspectives from the criminal justice system), and what happens to people in the long term after they leave hospital. Conclusions: Working to make the voices of people with learning disabilities and/or autistic people (as well as the staff who support them) centre stage is complex and sensitive. However, this lived experience/practice knowledge is a crucial resource if we are going to develop better policy and practice solutions in the longer term. Study registration: This study is registered at www.researchregistry.com (researchregistry6124). Funding: This award was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme (NIHR award ref: NIHR130298) and is published in full in Health and Social Care Delivery Research; Vol. 12, No. 3. See the NIHR Funding and Awards website for further award information.

Around 2000 people with learning disabilities and/or autistic people are living in hospital. This can be for many years. This is a real problem because hospitals: are not designed to help people to lead ordinary lives; are expensive; can be far away from people's homes and families; have had a number of abuse scandals. Despite this, there is little research on why people remain stuck in such settings. In particular, previous research often fails to talk directly to people with learning disabilities, their families and staff. Unless we listen to these voices we will not find solutions to these problems. Too many people will therefore remain in hospital unnecessarily. This is sensitive work. It requires skills in working: with people who may not communicate verbally; with people who might be very angry, scared and distressed; where there can be tensions around what is best. We therefore included an experienced team who could carry out such in-depth work in a way that suits the needs of the individual. We also worked with a group of people with learning disabilities and/or autistic people and their families to help us do our work well. We found that: lots of people are still stuck in hospital; they are very frustrated and distressed; hospital is a difficult place to be while you are waiting to leave. Once you are in it is very difficult to get out; health and social care staff are also very frustrated. They find it almost impossible to help people leave hospital; hospital staff and community services find it difficult to work with each other; government has promised to solve this for more than 10 years. However, there are still lots of problems.

AAPM Medical physics practice guideline 15.A: Peer review in clinical physics.

The American Association of Physicists in Medicine (AAPM) is a nonprofit professional society whose primary purposes are to advance the science, education, and professional practice of medical physics. The AAPM has more than 8000 members and is the principal organization of medical physicists in the United States. The AAPM will periodically define new practice guidelines for medical physics practice to help advance the science of medical physics and to improve the quality of service to patients throughout the United States. Existing medical physics practice guidelines will be reviewed for the purpose of revision or renewal, as appropriate, on their fifth anniversary or sooner. Each medical physics practice guideline represents a policy statement by the AAPM, has undergone a thorough consensus process in which it has been subjected to extensive review, and requires the approval of the Professional Council. The medical physics practice guidelines recognize that the safe and effective use of diagnostic and therapeutic radiology requires specific training, skills, and techniques, as described in each document. Reproduction or modification of the published practice guidelines and technical standards by those entities not providing these services is not authorized. The following terms are used in the AAPM practice guidelines: Must and Must Not: Used to indicate that adherence to the recommendation is considered necessary to conform to this practice guideline. While must is the term to be used in the guidelines, if an entity that adopts the guideline has shall as the preferred term, the AAPM considers that must and shall have the same meaning. Should and Should Not: Used to indicate a prudent practice to which exceptions may occasionally be made in appropriate circumstances.

Builder, Expert, Disruptor, Leader: The Many Roles of People with Lived Experience.

People with lived experience of health and social care, including family carers, should be at the heart of integrated care policy and practice. One of the challenges to achieving such co-production is insufficient clarity and limited understanding of the different roles that people with lived experience are asked or choose to undertake. Following research and workshops, four roles have been identified - community builder, improvement expert, disruptor/advocate, and citizen leader. Recognising the distinct contribution and demands of these roles will enable appropriate support and development for people with lived experience and the professionals and managers with whom they collaborate.

Mechanisms of Successful Implementation of Tailored Motivational Interviewing in a Multisite Study of Youth HIV Clinics in the United States.

BACKGROUND: A recent implementation science stepped-wedge trial of motivational interviewing (MI) in adolescent HIV clinics indicated variable degrees of implementation success. The present mixed-methods study analyzed trajectories of postimplementation MI competence scores and compared postimplementation qualitative interviews among the clinics with the highest levels of provider competency and the lowest levels of competency to further understand mechanisms of successful implementation. SETTING: Ten HIV clinics in the Adolescent Trials Network for HIV/AIDS Interventions. METHODS: This study used a sequential explanatory mixed-methods design. Continuous MI competency data from the parent study were structured with repeated measurements nested within providers nested within 10 sites. A mixed-effects regression model rank ordered the clinics by competence scores. Key stakeholders (N = 77) at the 10 randomized clinics completed a 1-hour qualitative interview at 12-month follow-up (immediately postimplementation). Using the phases of reflexive thematic analysis, interviews from the 3 highest competence clinics and the 3 lowest competence clinics were pragmatically analyzed. RESULTS: Thematic analysis suggested 3 central themes that influenced successful evidence-based practice (EBP) implementation. Organizational culture included the leadership, collective effort, and resources that influenced how the organization at large responded to the implementation intervention. Staff attitudes encapsulated individual providers' mindsets and attitudes about MI and the implementation intervention. EBP integration reflected the perception and use of MI by individuals and the organization as a whole. These themes and their subthemes are interconnected and exerted an influence on each other through the implementation process. CONCLUSIONS: Findings suggest additional implementation strategies to improve implementation of EBPs. Such mixed-methods research is critical to understanding the mechanisms of successful implementation of EBP and improving future implementation strategies.

Edison J. Trickett (1941-2022).

This article memorializes Edison J. Trickett (1941-2022), a leading theorist in community psychology. After joining the psychology faculty at Yale (1969-1977) and the Yale Psychoeducational Clinic, Ed became a faculty member at the University of Maryland, College Park, where he taught until 2000 and directed doctoral training in clinical/community psychology (1980-1985). He next went to the Department of Psychology at the University of Illinois at Chicago (2000-2015). Never one to fully retire, he continued teaching at the University of Miami (2015-2019). Ed devoted his career to the appreciation and understanding of context, social ecology, and human diversity in community psychology's theory, methods, and practice. (PsycInfo Database Record (c) 2023 APA, all rights reserved).

Improving mental healthcare access and experience for people from minority ethnic groups: an England-wide multisite experience-based codesign (EBCD) study.

BACKGROUND: Long-standing ethnic inequalities in access and mental healthcare were worsened by the COVID-19 pandemic. OBJECTIVES: Stakeholders coproduced local and national implementation plans to improve mental healthcare for people from minority ethnic groups. METHODS: Experience-based codesign conducted in four areas covered by National Health Service (NHS) mental health trusts: Coventry and Warwickshire, Greater Manchester, East London and Sheffield. Data were analysed using an interpretivist-constructivist approach, seeking validation from participants on their priority actions and implementation plans. Service users (n=29), carers (n=9) and health professionals (n=33) took part in interviews; focus groups (service users, n=15; carers, n=8; health professionals, n=24); and codesign workshops (service users, n=15; carers, n=5; health professionals, n=21) from July 2021 to July 2022. FINDINGS: Each study site identified 2-3 local priority actions. Three were consistent across areas: (1) reaching out to communities and collaborating with third sector organisations; (2) diversifying the mental healthcare offer to provide culturally appropriate therapeutic approaches and (3) enabling open discussions about ethnicity, culture and racism. National priority actions included: (1) co-ordination of a national hub to bring about system level change and (2) recognition of the centrality of service users and communities in the design and provision of services. CONCLUSIONS: Stakeholder-led implementation plans highlight that substantial change is needed to increase equity in mental healthcare in England. CLINICAL IMPLICATIONS: Working with people with lived experience in leadership roles, and collaborations between NHS and community organisations will be essential. Future research avenues include comparison of the benefits of culturally specific versus generic therapeutic interventions.

AAPM medical physics practice guideline 13.a: HDR brachytherapy, part A.

The American Association of Physicists in Medicine (AAPM) is a nonprofit professional society whose primary purposes are to advance the science, education, and professional practice of medical physics. The AAPM has more than 8000 members and is the principal organization of medical physicists in the United States. The AAPM will periodically define new practice guidelines for medical physics practice to help advance the science of medical physics and to improve the quality of service to patients throughout the United States. Existing medical physics practice guidelines (MPPGs) will be reviewed for the purpose of revision or renewal, as appropriate, on their fifth anniversary or sooner. Each medical physics practice guideline represents a policy statement by the AAPM, has undergone a thorough consensus process in which it has been subjected to extensive review, and requires the approval of the Professional Council. The medical physics practice guidelines recognize that the safe and effective use of diagnostic and therapeutic radiology requires specific training, skills, and techniques, as described in each document. Reproduction or modification of the published practice guidelines and technical standards by those entities not providing these services is not authorized. The following terms are used in the AAPM practice guidelines: (1) Must and must not: Used to indicate that adherence to the recommendation is considered necessary to conform to this practice guideline. (2) Should and should not: Used to indicate a prudent practice to which exceptions may occasionally be made in appropriate circumstances. Approved by AAPM's Executive Committee April 28, 2022.

Dent disease presenting with nyctalopia and electroretinographic correlates of vitamin A deficiency.

Purpose: To report a unique case of Dent Disease presenting with nyctalopia associated with vitamin A deficiency and abnormal electroretinogram findings without prior systemic symptomatology. Observations: A 16-year-old male presented with a several month history of nyctalopia and peripheral vision deficits. Central visual acuity, anterior and posterior segment examinations, and macular optical coherence tomography were unremarkable. Electroretinogram (ERG) testing revealed a rod-cone dystrophic pattern, with further workup demonstrating serum vitamin A deficiency (VAD). Laboratory evaluation revealed renal dysfunction and proteinuria with a significantly elevated urinary retinol-binding protein (RBP). Kidney biopsy showed glomerular and tubular disease.Genetic screening for inherited renal disease was performed identifying a hemizygous pathogenic variant c.2152C>T (p.Arg718*) in the Chloride Voltage-Gated Channel 5 (CLCN5) gene, confirming the diagnosis of X-linked Dent Disease. Following vitamin A supplementation, our patient reported resolution of nyctalopia and reversal of abnormal ERG findings were demonstrated. Conclusions and Importance: To our knowledge, this is the first case in the literature describing Dent disease solely presenting with ophthalmic symptoms of nyctalopia and abnormal electroretinogram findings that later reversed with vitamin A repletion. This case stresses the importance for clinicians to consider renal tubular disorders in the differential for VAD.

Organization of primary care.

Strong primary care does not develop spontaneously but requires a well-developed organizational planning between levels of care. Primary care-oriented health systems are required to effectively tackle unmet health needs of the population, and efficient primary care organization (PCO) is crucial for this aim. Via strong primary care, health delivery, health outcomes, equity, and health security could be improved. There are several theoretical models on how primary care can be organized. In this position paper, the key aspects and benchmarks of PCO will be explored based on previously mentioned frameworks and domains. The aim of this position paper is to assist primary care providers, policymakers, and researchers by discussing the current context of PCO and providing guidance for implementation, development, and evaluation of it in a particular setting. The conceptual map of this paper consists of structural and process (PC service organization) domains and is adapted from frameworks described in literature and World Health Organization resources. Evidence we have gathered for this paper shows that for establishing a strong PCO, it is crucial to ensure accessible, continuous, person-centered, community-oriented, coordinated, and integrated primary care services provided by competent and socially accountable multiprofessional teams working in a setting where clear policy documents exist, adequate funding is available, and primary care is managed by dedicated units.

SARS-CoV-2 Infections in Vaccinated and Unvaccinated Populations in Camp Lemonnier, Djibouti, from April 2020 to January 2022.

The global pandemic caused by severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) has highlighted the disparity between developed and developing countries for infectious disease surveillance and the sequencing of pathogen genomes. The majority of SARS-CoV-2 sequences published are from Europe, North America, and Asia. Between April 2020 and January 2022, 795 SARS-CoV-2-positive nares swabs from individuals in the U.S. Navy installation Camp Lemonnier, Djibouti, were collected, sequenced, and analyzed. In this study, we described the results of genomic sequencing and analysis for 589 samples, the first published viral sequences for Djibouti, including 196 cases of vaccine breakthrough infections. This study contributes to the knowledge base of circulating SARS-CoV-2 lineages in the under-sampled country of Djibouti, where only 716 total genome sequences are available at time of publication. Our analysis resulted in the detection of circulating variants of concern, mutations of interest in lineages in which those mutations are not common, and emerging spike mutations.

'Why are we stuck in hospital?' Understanding delayed hospital discharges for people with learning disabilities and/or autistic people in long-stay hospitals in the UK.

Despite longstanding efforts at de-institutionalisation, around 2000 people with learning disabilities and/or autistic people in England currently live in hospital settings, amidst reports of protracted stays, limited progress towards living more ordinary lives and scandals of abuse and poor care. Yet, there is relatively little research on why people with learning disabilities and/or autistic people are delayed in hospitals, and what exists has significant limitations. In particular, previous studies have rarely talked directly to people with learning disabilities and/or autistic people, their families and frontline staff about their experiences of living or working in such settings, the barriers to discharge and what would help more people to lead chosen lifestyles. This paper presents the findings of a structured literature review conducted between January and March 2021 on delayed discharges of people with learning disabilities in long-stay hospital settings. It investigated: the proportion of people with learning disabilities delayed in long-stay hospital settings, the suggested reasons for these delays and the proposed solutions. The literature reported delays for 11%-80% of inpatients in different settings. The reasons reported are related either to particular characteristics of the person (which we find problematic) or limitations of the system supporting them. However, delays were defined and reported inconsistently, reasons usually lacked depth and detail, and the majority of included studies did not engage directly with the people living in long-stay settings, their families or frontline staff. Without listening to these voices, genuine solutions will be difficult to find.

Restricted valency (NPNA)n repeats and junctional epitope-based circumsporozoite protein vaccines against Plasmodium falciparum.

The Circumsporozoite Protein (CSP) of Plasmodium falciparum contains an N-terminal region, a conserved Region I (RI), a junctional region, 25-42 copies of major (NPNA) and minor repeats followed by a C-terminal domain. The recently approved malaria vaccine, RTS,S/AS01 contains NPNAx19 and the C-terminal region of CSP. The efficacy of RTS,S against natural infection is low and short-lived, and mapping epitopes of inhibitory monoclonal antibodies may allow for rational improvement of CSP vaccines. Tobacco Mosaic Virus (TMV) was used here to display the junctional epitope (mAb CIS43), Region I (mAb 5D5), NPNAx5, and NPNAx20 epitope of CSP (mAbs 317 and 580). Protection studies in mice revealed that Region I did not elicit protective antibodies, and polyclonal antibodies against the junctional epitope showed equivalent protection to NPNAx5. Combining the junctional and NPNAx5 epitopes reduced immunogenicity and efficacy, and increasing the repeat valency to NPNAx20 did not improve upon NPNAx5. TMV was confirmed as a versatile vaccine platform for displaying small epitopes defined by neutralizing mAbs. We show that polyclonal antibodies against engineered VLPs can recapitulate the binding specificity of the mAbs and immune-focusing by reducing the structural complexity of an epitope may be superior to immune-broadening as a vaccine design approach. Most importantly the junctional and restricted valency NPNA epitopes can be the basis for developing highly effective second-generation malaria vaccine candidates.

RH5.1-CyRPA-Ripr antigen combination vaccine shows little improvement over RH5.1 in a preclinical setting.

Background: RH5 is the leading vaccine candidate for the Plasmodium falciparum blood stage and has shown impact on parasite growth in the blood in a human clinical trial. RH5 binds to Ripr and CyRPA at the apical end of the invasive merozoite form, and this complex, designated RCR, is essential for entry into human erythrocytes. RH5 has advanced to human clinical trials, and the impact on parasite growth in the blood was encouraging but modest. This study assessed the potential of a protein-in-adjuvant blood stage malaria vaccine based on a combination of RH5, Ripr and CyRPA to provide improved neutralizing activity against P. falciparum in vitro. Methods: Mice were immunized with the individual RCR antigens to down select the best performing adjuvant formulation and rats were immunized with the individual RCR antigens to select the correct antigen dose. A second cohort of rats were immunized with single, double and triple antigen combinations to assess immunogenicity and parasite neutralizing activity in growth inhibition assays. Results: The DPX® platform was identified as the best performing formulation in potentiating P. falciparum inhibitory antibody responses to these antigens. The three antigens derived from RH5, Ripr and CyRPA proteins formulated with DPX induced highly inhibitory parasite neutralising antibodies. Notably, RH5 either as a single antigen or in combination with Ripr and/or CyRPA, induced inhibitory antibodies that outperformed CyRPA, Ripr. Conclusion: An RCR combination vaccine may not induce substantially improved protective immunity as compared with RH5 as a single immunogen in a clinical setting and leaves the development pathway open for other antigens to be combined with RH5 as a next generation malaria vaccine.