Decision aids for female BRCA mutation carriers: a scoping review.

OBJECTIVES: Women who inherit a pathogenic BRCA1 or BRCA2 mutation are at substantially higher risk of developing breast and ovarian cancer than average. Several cancer risk management strategies exist to address this increased risk. Decisions about which strategies to choose are complex, personal and multifactorial for these women. Decision aids (DAs) are tools that assist patients in making health-related decisions. The aim of this scoping review was to map evidence relating to the development and testing of patient DAs for cancer unaffected BRCA mutation carriers. DESIGN: Scoping review conducted according to the Joanna Briggs Institute's (JBI's) scoping review methodological framework. DATA SOURCES: MEDLINE, EMBASE, CINAHL, Web of Science. No restrictions applied for language or publication date. A manual search was also performed. ELIGIBILITY CRITERIA FOR SELECTING STUDIES: Studies on DAs for cancer risk management designed for or applicable to women with a pathogenic BRCA1 or BRCA2 mutation who are unaffected by breast or ovarian cancer. DATA EXTRACTION AND SYNTHESIS: Data were extracted using a form based on the JBI instrument for extracting details of studies' characteristics and results. Data extraction was performed independently by two reviewers. Extracted data were tabulated. RESULTS: 32 evidence sources relating to development or testing of 21 DAs were included. Four DAs were developed exclusively for cancer unaffected BRCA mutation carriers. Of these, two covered all guideline recommended risk management strategies for this population though only one of these was readily available publicly in its full version. All studies investigating DA effectiveness reported a positive effect of the DA under investigation on at least one of the outcomes evaluated, however only six DAs were tested in randomised controlled trials. CONCLUSION: This scoping review has mapped the landscape of the literature relating to developing and testing, DAs applicable to cancer unaffected BRCA mutation carriers.

Stem cell models of TAFAZZIN deficiency reveal novel tissue-specific pathologies in Barth Syndrome.

Barth syndrome (BTHS) is a rare mitochondrial disease caused by pathogenic variants in the gene TAFAZZIN, which leads to abnormal cardiolipin (CL) metabolism on the inner mitochondrial membrane. Although TAFAZZIN is ubiquitously expressed, BTHS involves a complex combination of tissue specific phenotypes including cardiomyopathy, neutropenia, skeletal myopathy, and growth delays, with a relatively minimal neurological burden. To understand both the developmental and functional effects of TAZ-deficiency in different tissues, we generated isogenic TAZ knockout (TAZ- KO) and WT cardiomyocytes (CMs) and neural progenitor cells (NPCs) from CRISPR-edited induced pluripotent stem cells (iPSCs). In TAZ-KO CMs we discovered evidence of dysregulated mitophagy including dysmorphic mitochondria and mitochondrial cristae, differential expression of key autophagy-associated genes, and an inability of TAZ-deficient CMs to properly initiate stress-induced mitophagy. In TAZ-deficient NPCs we identified novel phenotypes including a reduction in CIV abundance and CIV activity in the CIII2&CIV2 intermediate complex. Interestingly, while CL acyl chain manipulation was unable to alter mitophagy defects in TAZ-KO CMs, we found that linoleic acid or oleic acid supplementation was able to partially restore CIV abundance in TAZ-deficient NPCs. Taken together, our results have implications for understanding the tissue-specific pathology of BTHS and potential for tissue-specific therapeutic targeting. Moreover, our results highlight an emerging role for mitophagy in the cardiac pathophysiology of BTHS and reveal a potential neuron-specific bioenergetic phenotype.

Multidisciplinary user experience of a newly implemented electronic patient record in Ireland: An exploratory qualitative study.

BACKGROUND: Implementation of an Electronic Patient Record (EPR) in a key milestone in the digital strategy of modern healthcare organisations. The implementation of EPR systems can be viewed as challenging and complex. OBJECTIVE: The aim of the study was to investigate user perspectives and experiences of the implementation of an Electronic Medical Record in a major academic teaching hospital, with simultaneous 'go-live' across the whole hospital taking place. METHODS: Focus groups and individual in-depth interviews were conducted with stakeholders and users (n = 105), approximately nine months post-EPR implementation. The study explored EPR users' perceptions using an extended theoretical framework of the DeLone and McLean Information Systems Success Model (2003), which measured information systems, system quality, information quality, service quality, use/perceived usefulness & user satisfaction and net benefits. RESULTS: Staff engagement and satisfaction was high and the EPR is accepted as the new standard way of completing care. There was agreement that the EPR affords transparency, and greater accountability. There was some concern expressed regarding impact of the EPR on interprofessional and patient/provider interactions and communication. Physicians reported the inputting of social history through free text as an issue of concern and time consuming. The Big Bang approach with mandatory conversion was key to the successful adoption of EPR. There was consensus across professional and administrative respondents that there was no appetite to return to paper-based records. CONCLUSION: The successful roll out of the EPR reflects the digital readiness of healthcare providers and organisations. The potential for unintended consequences on work process requires continual monitoring. A key future benefit of the EPR will be the capacity to reach a broader understanding and analysis of variation in processes and outcomes within healthcare organisations. It is clear that skills in data analytics will be needed to mine data successfully.

A scoping review of the unmet needs of patients diagnosed with idiopathic pulmonary fibrosis (IPF).

AIMS: Patients diagnosed with idiopathic pulmonary fibrosis (IPF) have a high symptom burden and numerous needs that remain largely unaddressed despite advances in available treatment options. There is a need to comprehensively identify patients' needs and create opportunities to address them. This scoping review aimed to synthesise the available evidence and identify gaps in the literature regarding the unmet needs of patients diagnosed with IPF. METHODS: The protocol for the review was registered with Open Science Framework (DOI 10.17605/OSF.IO/SY4KM). A systematic search was performed in March 2022, in CINAHL, MEDLINE, Embase, PsychInfo, Web of Science Core Collection and ASSIA Applied Social Science Index. A comprehensive review of grey literature was also completed. Inclusion criteria included patients diagnosed with IPF and date range 2011-2022. A range of review types were included. Data was extracted using a data extraction form. Data was analysed using descriptive and thematic analysis. A total of 884 citations were reviewed. Ethical approval was not required. RESULTS: 52 citations were selected for final inclusion. Five themes were identified: 1.) psychological impact of an IPF diagnosis. 2.) adequate information and education: at the right time and in the right way. 3.) high symptom burden support needs. 4.) referral to palliative care and advance care planning (ACP). 5.) health service provision-a systems approach. CONCLUSION: This review highlights the myriad of needs patients with IPF have and highlights the urgent need for a systems approach to care, underpinned by an appropriately resourced multi-disciplinary team. The range of needs experienced by patients with IPF are broad and varied and require a holistic approach to care including targeted research, coupled with the continuing development of patient-focused services and establishment of clinical care programmes.

Content comparison of unmet needs self-report measures for lymphoma cancer survivors: A systematic review.

PURPOSE: The increasing recognition of the complex impacts of a cancer diagnosis and its treatment has led to efforts to develop instruments to reflect survivors' needs accurately. However, evidence regarding the content and quality of instruments used to evaluate the unmet needs of lymphoma survivors is lacking. This review aimed to evaluate the psychometric properties and comprehensiveness of available self-report instruments to assess unmet needs and quality of life with adult lymphoma survivors. METHODS: A systematic search of five databases (CINAHL, EMBASE, Medline, PsycInfo and Scopus) was conducted to identify instruments measuring unmet needs or quality of life outcomes. Original articles reporting the instrument's validation or development via citation screening were retrieved and screened against eligibility criteria. An appraisal of the instrument's measurement properties was conducted, guided by the COSMIN methodology and reported in accordance with PRISMA guidelines. A content comparison using the Supportive Care in Cancer Framework was performed. RESULTS: Twelve instruments met the inclusion criteria; only one was explicitly developed for lymphoma (Functional Assessment of Cancer Therapy-Lymphoma). Four instruments focused on the construct of need, and eight focused on quality of life. The psychometric data in the published literature is not comprehensive; there is heterogeneity in their development, content and quality. No included instrument was examined for all COSMIN measurement properties, and methodological quality was variable; all instruments measured at least four domains of need. The emotional domain was reviewed by all instruments (n = 12), and the spiritual and informational domains received the least focus (n = 4 each). CONCLUSION: This review provides a platform for instrument comparison, with suggestions for important factors to consider in systematically selecting unmet needs and quality of life self-report measures for adult lymphoma survivors. Considering the various discrepancies and limitations of the available instruments, using more than one instrument is recommended. In selecting measurement instruments, researchers should consider research objectives, study design, psychometric properties and the pros and cons of using more than one measure. Evaluating the participant burden and feasibility of completing the selected instrument is important for lymphoma survivors, a group burdened by cancer-related fatigue and cognitive impairment.

Exploration of the unmet needs of patients diagnosed with idiopathic pulmonary fibrosis: a scoping review protocol.

INTRODUCTION: Interstitial lung diseases consist of a range of lung disorders, the most prevalent being idiopathic pulmonary fibrosis (IPF). IPF is a chronic, progressive disease, resulting in loss of lung function and potentially significant impacts on quality of life. There is an increasing need to address unmet needs in this population as there is evidence that unmet needs may impact quality of life and health outcomes. The key objective of this scoping review is to define the unmet needs of patients living with a diagnosis of IPF and to identify gaps in the literature relating to unmet needs. Findings will inform the development of services and the introduction of patient-centred clinical care guidelines for IPF. METHODS AND ANALYSIS: This scoping review is guided by the methodological framework for conducting scoping reviews developed by the Joanna Briggs Institute. The Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews checklist is used for guidance. The following databases will be searched: CINAHL, MEDLINE, PsycINFO, Web of Science, Embase and ASSIA and include a comprehensive grey literature search. The review will report on adult patients >18 with a diagnosis of IPF or pulmonary fibrosis and be limited to publications from 2011 onwards, with no language restrictions applied. Two independent reviewers will screen articles in consecutive stages for relevance against the inclusion and exclusion criteria. Data will be extracted using a predefined data extraction form and analysed using descriptive and thematic analysis. Findings will be presented in tabular form, coupled with a narrative summary of the evidence. ETHICS AND DISSEMINATION: Ethics approval is not required for this scoping review protocol. We will disseminate our findings using traditional approaches that include open access peer-reviewed publications and scientific presentations.

A Mixed Methods Evaluation of a Pilot Multidisciplinary Breathlessness Support Service.

Breathlessness support services have demonstrated benefits for breathlessness mastery, quality of life and psychosocial outcomes for people living with breathlessness. However, these services have predominantly been implemented in hospital and home care contexts. This study aims to evaluate the adaptation and implementation of a hospice-based outpatient Multidisciplinary Breathlessness Support Service (MBSS) in Ireland. A sequential explanatory mixed methods design guided this study. People with chronic breathlessness participated in longitudinal questionnaires (n = 10), medical record audit (n = 14) and a post-discharge interview (n = 8). Caregivers (n = 1) and healthcare professionals involved in referral to (n = 2) and delivery of (n = 3) the MBSS participated in a cross-sectional interview. Quantitative and qualitative data were integrated deductively via the pillar integration process, guided by the RE-AIM framework. Integration of mixed methods data enhanced understanding of factors influencing the reach, adoption, implementation and maintenance of the MBSS, and the potential outcomes that were most meaningful for service users. Potential threats to the sustainability of the MBSS related to potential preconceptions of hospice care, the lack of standardized discharge pathways from the service and access to primary care services to sustain pharmacological interventions. This study suggests that an adapted multidisciplinary breathlessness support intervention is feasible and acceptable in a hospice context. However, to ensure optimal reach and maintenance of the intervention, activities are required to ensure that misconceptions about the setting do not influence willingness to accept referral to MBSS services and integration of services is needed to enable consistency in referral and discharge processes.

A comprehensive analysis of the readability of consent forms for blood transfusion in Spain.

BACKGROUND: This study aimed to evaluate the readability of consent forms for blood transfusion in public hospitals in Spain. MATERIALS AND METHODS: This was a cross-sectional, national study conducted within the Spanish healthcare system. Data were collected through the online retrieval of consent documents and direct consultation with 223 public hospitals. Consent forms were subjected to readability assessment including typographical, grammatical and lexical dimensions. The INFLESZ scale, a well-validated instrument adapted to the reading habits of Spaniards, was applied to determine the grammatical readability of the documents. The Spanish Mosby's Dictionary and the Dictionary of Spanish were used together to systematically identify the number of medical terms contained in the text. Data were analyzed using descriptive and inferential statistics. RESULTS: Forty-five written consent forms for blood transfusion, in use in 126 general public hospitals were evaluated for various parameters, including font size (χ̄ =10.41), abbreviations (χ̄ =10.58), word count (χ̄ =595, 209 min-1,499 max) and length (1 to 7 pages). The overall readability score (χ̄ =50.66) was indicative that consent forms are somewhat difficult to read. A heterogeneity of 116 different healthcare terminology words was identified. Word count was statistically and moderately positively related to the number of medical terms identified in the text (rho=0.496, p=0.001) and the INFLESZ score (rho=0.34, p=0.023). DISCUSSION: In this first national study to assess the ease of reading written information on blood transfusion given to patients, deficiencies were found in the three dimensions of readability (typographical, grammatical and lexical) and a lack of uniformity among the written consent forms is pronounced. Further research is needed to develop more person-centered tools to support patients in the process of consenting for blood transfusion.

Barriers and facilitators to older adults' acceptance of camera-based active and assisted living technologies: a scoping review protocol.

Objective: To identify and synthesize evidence on the barriers and facilitators to older adults' acceptance of camera-based active and assisted living (AAL) technologies in the home. Introduction: Camera-based AAL technologies have been heralded as an important solution to population ageing. By leveraging state-of-the-art computer vision techniques, camera-based AAL technologies can secure greater levels of safety, health, and independence for older adults whilst benefiting their desires to age-in-place. However, these technologies face widespread rejection and are at present scarcely used. A critical first step toward enhancing older adults' acceptance and uptake of camera-based AAL technologies is to understand the barriers and facilitators to their acceptance of said technology. Inclusion criteria: This review will consider primary studies reporting data on the barriers and facilitators to the acceptance of camera-based AAL technologies among community-dwelling older adults aged 60 and above. No date or language restrictions will be applied. Methods: Following JBI scoping review methodology, key electronic databases ( e.g., MEDLINE, CINAHL, Embase, Web of Science, ACM Digital Library, IEEE Xplore) and the grey literature ( e.g., Google Scholar) will be searched to locate both unpublished and published articles of relevance. Retrieved citations will undergo independent screening against pre-defined eligibility criteria. Data will be independently extracted and mapped to the Theoretical Domains Framework with guidance from a pre-piloted coding manual. Results will be presented in tabular form accompanied by a narrative summary of barriers and facilitators.

Living with or beyond lymphoma: A rapid review of the unmet needs of lymphoma survivors.

OBJECTIVE: To establish an understanding of the unmet needs of people living with or beyond a lymphoma diagnosis. Survivors of lymphoma are at increased risk of unmet needs due to cancer, treatment-related toxicities and extended survivorship. Despite the rapidly growing numbers of lymphoma survivors, their needs and research priorities are underserved and undervalued, therefore left largely unaddressed. METHODS: A rapid review method and reflexive thematic analysis approach assimilated current knowledge. Eligibility criteria included quantitative, qualitative, or mixed approaches employing cross-sectional, longitudinal, cohort or review designs focused on the needs of adult lymphoma survivors (any subtype or stage of disease). Five databases: CINAHL, EMBASE, Medline, PsycInfo and Scopus, were systematically searched. RESULTS: Forty-seven studies met the inclusion criteria via a stringent screening process facilitated by NVivo. Almost 60 per cent of articles were published within the last five years and investigated a homogenous lymphoma sample. Most studies employed quantitative approaches (77%) and cross-sectional designs (67%). Studies were of high methodological quality. Five major themes were identified: disparity in health service delivery, the psychological impact of cancer, impactful and debilitating concerns, the monetary cost of survival and insufficient provision of survivorship information. A meta-analytical approach was not feasible due to the breadth of methodologies of included studies. CONCLUSIONS: This review shows that lymphoma survivors experience a myriad of unmet needs across multiple domains, reinforcing the need for lymphoma-specific research. However, more research is needed to advance and achieve informed decision-making relating to survivorship care, placing due attention to the needs and research priorities of lymphoma survivors.

Co-worker relationships and their impact on nurses in Irish public healthcare settings.

This article presents the findings of a secondary analysis of data arising from a quantitative study of 3769 nurses on co-worker relationships and their impact on nurses working in public healthcare settings in Ireland. The overall findings from this analysis suggest moderate to high levels of satisfaction with co-worker relationships, with an average scale mean of 77%. Statistically significant lower scale means were identified in respect of nurses whose basic nursing qualification was awarded in a country outside the EU, among students and among those working in the west of Ireland. Respondents intending to leave the healthcare workforce reported significantly lower scores (74%) on this index compared with those intending to stay (79%). Significant positive correlations between co-worker relationships and workplace engagement (0.233), job satisfaction (0.225), organisational commitment (0.221) and perception of managers (0.259) were identified. These findings have implications for the retention of nurses working in Irish public healthcare services.

Interventions targeting postoperative pulmonary complications (PPCs) in patients undergoing esophageal cancer surgery: a systematic review of randomized clinical trials and narrative discussion.

Postoperative pulmonary complications (PPCs) represent the most common complications after esophageal cancer surgery. The lack of a uniform reporting nomenclature and a severity classification has hampered consistency of research in this area, including the study of interventions targeting prevention and treatment of PPCs. This systematic review focused on RCTs of clinical interventions used to minimize the impact of PPCs. Searches were conducted up to 08/02/2021 on MEDLINE (OVID), CINAHL, Embase, Web of Science, and the COCHRANE library for RCTs and reported in accordance with PRISMA guidelines. A total of 339 citations, with a pooled dataset of 1,369 patients and 14 RCTs, were included. Heterogeneity of study design and outcomes prevented meta-analysis. PPCs are multi-faceted and not fully understood with respect to etiology. The review highlights the paucity of high-quality evidence for best practice in the management of PPCs. Further research in the area of intraoperative interventions and early postoperative ERAS standards is required. A consistent uniform for definition of pneumonia after esophagectomy and the development of a severity scale appears warranted to inform further RCTs and guidelines.

Prevalence vs impact: a mixed methods study of survivorship issues in colorectal cancer.

PURPOSE: This study aims to explore the prevalence of CRC survivorship issues and their impact on survivors' quality of life (QoL). METHODS: This study utilised a mixed methods sequential explanatory design. Adult CRC survivors between 6- and 60-months post-diagnosis (n = 304) were purposively recruited from three hospitals and twenty-one cancer support centres in Ireland. QoL was evaluated using the EuroQol and FACT-C questionnaires and results compared to population norms. 22 survey participants took part in semi-structured interviews exploring the impact of survivorship issues on their daily lives. RESULTS: While CRC survivors reported QoL outcomes comparable to or better than normative populations, 54% were dissatisfied with their QoL. The most common survivorship issues reported included negative body image (74%), fatigue (68%), sexual dysfunction (66%) and sleep disturbance (59%). Thematic analysis of the qualitative data illustrated survivors' attempts to live with the impact of cancer and its treatment (loss, fear, impact) and striving to contextualise, reframe and understand the consequences of cancer and its treatment (control, vigilance, benefit). Within these themes, the cross-domain impact of less prevalent symptoms including bowel dysfunction (28-57%) and peripheral neuropathy (47%) were widely discussed. CONCLUSIONS: Although cancer survivors report positive QoL outcomes, many experience distressing physical, psychological and social effects. The findings suggest less common and difficult to manage symptoms are the greatest source of distress and unmet need. Support and information must be tailored to address survivors' individual needs and preferences for support, informed by holistic person-centred assessment.

A Digital Health Platform for Integrated and Proactive Patient-Centered Multimorbidity Self-management and Care (ProACT): Protocol for an Action Research Proof-of-Concept Trial.

BACKGROUND: Multimorbidity is defined as the presence of two or more chronic diseases and associated comorbidities. There is a need to improve best practices around the provision of well-coordinated, person-centered care for persons with multimorbidities. Present health systems across the European Union (EU) focus on supporting a single-disease framework of care; the primary challenge is to create a patient-centric, integrated care ecosystem to understand and manage multimorbidity. ProACT is a large-scale project funded by the European Commission under the Horizon 2020 programme, that involved the design, development, and evaluation of a digital health platform to improve and advance home-based integrated care, and supported self-management, for older adults (aged ≥65 years) living with multimorbidity. OBJECTIVE: This paper describes the trial implementation protocol of a proof-of-concept digital health platform (ProACT) in 2 EU member states (Ireland and Belgium) to support older persons with multimorbidities self-managing at home, supported by their care network (CN). METHODS: Research was conducted across 2 EU member states, Ireland and Belgium. A 12-month action research trial design, divided into 3 evaluation cycles and lasting 3 months each, with a reflective redesign and development phase of 1 month after cycles 1 and 2 was conducted. Participants were 120 (60/120, 50% in Ireland and 60/120, 50% in Belgium) older persons with multimorbidities diagnosed with two or more of the following chronic conditions: diabetes, chronic obstructive pulmonary disease, chronic heart failure, and cardiovascular diseases. With permission from persons with multimorbidities, members of their CN were invited to participate in the study. Persons with multimorbidities were provided with ProACT technologies (tablet, devices, or sensors) to support them in self-managing their conditions. CN members also received access to an app to remotely support their persons with multimorbidity. Qualitative and quantitative feedback and evaluation data from persons with multimorbidity and CN participants were collected across four time points: baseline (T1), at the end of each 3-month action research cycle (T2 and T3), and in a final posttrial interview (T4). Thematic analysis was used to analyze the qualitative interview data. Quantitative data were analyzed via platform use statistics (to assess engagement) and standardized questionnaires (using descriptive and inferential statistics). This study is approved by the ethics committees of Ireland and Belgium. RESULTS: The trial implementation phase for this 44-month (2016-2019) funded study was April 2018 to June 2019. The trial outcomes are at various stages of publication since 2021. CONCLUSIONS: ProACT aims to co-design and develop a digital intervention with persons with multimorbidities and their CN, incorporating clinical guidelines with the state of the art in human-computer interaction, behavioral science, health psychology, and data analytic methods to deliver a digital health platform to advance self-management of multimorbidity at home, as part of a proactive, integrated model of supported person-centered care. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR1-10.2196/22125.

The role and activities of the Traveller mental health liaison nurse: Findings from a multi-stakeholder evaluation.

Irish Travellers are a minority ethnic group within the Irish state with a distinct culture and set of traditions. Travellers experience mental health inequalities, high rates of mental ill health, and structural and individual barriers to mental health supports. A Traveller Mental Health Liaison Nurse (TMHLN) was introduced in a healthcare region in Ireland to provide greater mental health-related support to Travellers. This paper presents a description of the TMHLN role following a multi-stakeholder evaluation. The research design was descriptive qualitative and the findings are reported using COREQ criteria. Thirty-four key stakeholders were interviewed individually or as part of focus groups. Thematic analysis generated two broad themes: the role context, and the specific activities of the role. Mental health nursing experience and understanding of local issues and services were key, as was use of language, building trusting relations, creating the metaphorical, and having the physical, space for working. Specific activities involved in-reach and outreach work, including one-to-one mental health support provision, delivery of education/training sessions to Travellers and service providers, (re)establishing links to specialist services, integrated and interagency working, and promoting cultural competency. The findings set out a role with a greater emphasis on the use of recovery technologies, having an emphasis on psychosocial interventions and self-care, and less focus on biomedical technologies, signs and symptoms, and clinical outcomes. This study contributes to knowledge on the role of a MHLN as this relates to working with marginalized minority groups.

Patient-reported experiences of consultation with an advanced nurse practitioner: Factor structure and reliability analysis of the patient enablement and satisfaction survey.

AIM: The aim was to analyse the psychometric properties of a patient-reported-experience measure, the Patient Enablement and Satisfaction Survey (PESS), when used to evaluate the care provided by Advanced Nurse Practitioners (ANPs) in terms of factor structure and internal consistency. The PESS is a 20-item, patient-completed data collection tool that was originally developed to measure patient experience and enablement following consultation with nurses in general practice. DESIGN: Cross-sectional survey; validity and reliability analysis. METHODS: The sample in this study consisted of 178 patients who consulted with 26 ANPs working in four different specialities. Data were collected between June and December 2019. An exploratory factor analysis of the PESS was conducted to determine convergent validity which was supported by parallel analysis and the traditional Kaiser criterion. The internal consistency of individual PESS items was determined via Cronbach's alpha, McDonald's omega, the Average Variance Extracted tests and item-subscale/total score correlations. RESULTS: A three-factor structure (PESS-ANP) was found through exploratory factor analysis and this was supported by parallel analysis, the traditional Kaiser criterion and the percentage of variance explained criterion. A high degree of internal consistency was reported across all factors. One question was omitted from the analysis ('Overall Satisfaction') following the identification of problematic cross-loadings. The three factor solution was identified as: patient satisfaction, quality of care provision and patient enablement. CONCLUSION: The findings of this study propose a three-factor model that is sufficiently reliable for analysing the experience and enablement of patients following consultation with an ANP. IMPACT: Increasingly, patient-reported experience measures are being used to evaluate patients' experience of receiving care from a healthcare professional. The PESS was identified to be reliable in evaluating the experience of patients who receive care from an ANP while a three-factor structure was proposed that can capture specific attributes of this care.

Decision aids for female BRCA mutation carriers: a scoping review protocol.

INTRODUCTION: Women who inherit a pathogenic mutation in Breast Cancer Susceptibility Genes 1 or 2 (BRCA1 or BRCA2) are at substantially higher risk of developing breast and ovarian cancer than the average woman. Several cancer risk management strategies exist to address this increased risk. Decisions about which risk management strategies to choose are complex, personal and multifactorial for these women. This scoping review will map evidence relevant to cancer risk management decision making in BRCA mutation carriers without a personal history of cancer. The objective is to identify and describe the features of patient decision aids that have been developed for BRCA mutation carriers. This information may be beneficial for designing new decision aids or adapting existing decision aids to support decision making in this population. METHODS AND ANALYSIS: This scoping review will be conducted according to the Joanna Briggs Institute's scoping review methodological framework. The Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews checklist will be used for guidance. Studies on decision aids for women with a BRCA mutation who are unaffected by breast or ovarian cancer will be considered for inclusion. Five electronic databases will be searched (MEDLINE, EMBASE, Cochrane Library, CINAHL, Web of Science) with no restrictions applied for language or publication date. Studies for inclusion will be selected independently by two review authors. Data will be extracted using a predefined data extraction form. Findings will be presented in tabular form. A narrative description of the evidence will complement the tabulated results. ETHICS AND DISSEMINATION: Ethical approval for conducting this scoping review is not required as this study will involve secondary analysis of existing literature. Findings will be published in a peer-reviewed journal and presented at relevant conferences.

Metabolic programs define dysfunctional immune responses in severe COVID-19 patients.

It is unclear why some SARS-CoV-2 patients readily resolve infection while others develop severe disease. By interrogating metabolic programs of immune cells in severe and recovered coronavirus disease 2019 (COVID-19) patients compared with other viral infections, we identify a unique population of T cells. These T cells express increased Voltage-Dependent Anion Channel 1 (VDAC1), accompanied by gene programs and functional characteristics linked to mitochondrial dysfunction and apoptosis. The percentage of these cells increases in elderly patients and correlates with lymphopenia. Importantly, T cell apoptosis is inhibited in vitro by targeting the oligomerization of VDAC1 or blocking caspase activity. We also observe an expansion of myeloid-derived suppressor cells with unique metabolic phenotypes specific to COVID-19, and their presence distinguishes severe from mild disease. Overall, the identification of these metabolic phenotypes provides insight into the dysfunctional immune response in acutely ill COVID-19 patients and provides a means to predict and track disease severity and/or design metabolic therapeutic regimens.

CMLS forum reviews: mitochondrial damage control.

Mitochondria supply cellular energy through oxidative phosphorylation and fulfill numerous additional functions that are fundamental to cellular homeostasis and stress responses. Mitochondrial malfunction, arising from inherent defects of the organelle itself, aging, or acute or chronic stress, can cause substantial damage to organismal health. For instance, mitochondrial malfunction contributes to inflammation, neurodegeneration, tumorigenesis and cardiovascular diseases. Therefore, various quality control mechanisms exist that support a functional mitochondrial organelle compartment. The CMLS Forum Reviews introduced here present a collection of articles covering select topics on basic mechanisms and pathophysiological contexts of mitochondrial damage control.

Assessing the impact of dementia inclusive environmental adjustment in the emergency department.

OBJECTIVES: Acute hospitals, in particular the emergency department, can be disorienting for people living with dementia. As part of a larger project to improve care for people living with dementia, dementia-inclusive modifications were made to two emergency department bays in a large acute care hospital in Ireland. Modifications to spatial configuration included noise reduction, altered lighting and the addition of an orientation aid and fixed seating for relatives. METHOD: A mixed methods approach was employed with both service user and service provider perspectives explored (survey of service providers (n = 16) and interviews with family carers (n = 10) at one time point and interviews with service providers (n = 8 and n = 5) and key stakeholders (n = 3) as well as audit data (at two time points) to evaluate the impact of the modifications made to the emergency department. RESULTS: Orientation and navigation within the modified bays were improved though technical issues with the orientation aid were highlighted. Further user information on the functionality of the adjustable lighting would be required to maximise its benefits. This lighting and use of calming colours, together with the addition of noise-reduction bay screens, served to reduce sensory stimulation. The provision of adequate space and seating for family carers was extremely beneficial. The removal of unnecessary equipment and use of new structures to store relevant clinical equipment were other positive changes implemented. A number of challenges in the design development of the modified bays were highlighted, as well as ongoing broader environmental challenges within the emergency department environment. CONCLUSION: The findings suggest that the modified bays contributed positively to the experience of people living with dementia and their families in the emergency department.