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Background: FRMD5 variants were recently identified in patients with developmental delay, ataxia, and eye movement abnormalities. Objectives: We describe 2 patients presenting with childhood‐onset ataxia, nystagmus, and seizures carrying pathogenic de novo FRMD5 variants. Weighted gene co‐expression network analysis (WGCNA) was performed to gain insights into the function of FRMD5 in the brain. Methods: Trio‐based whole‐exome sequencing was performed in both patients, and CoExp web tool was used to conduct WGCNA. Results: Both patients presented with developmental delay, childhood‐onset ataxia, nystagmus, and seizures. Previously unreported findings were diffuse choreoathetosis and dystonia of the hands (patient 1) and areas of abnormal magnetic resonance imaging signal in the white matter (patient 2). WGCNA showed that FRMD5 belongs to gene networks involved in neurodevelopment and oligodendrocyte function. Conclusions: We expanded the phenotype of FRMD5‐related disease and shed light on its role in brain function and development. We recommend including FRMD5 in the genetic workup of childhood‐onset ataxia and nystagmus. © 2024 The Authors. Movement Disorders published by Wiley Periodicals LLC on behalf of International Parkinson and Movement Disorder Society. [ABSTRACT FROM AUTHOR]

Experiencing bereavement as a child or young person (CYP) can have long-lasting effects. The societal and environmental burdens of the SARS-CoV-2 pandemic exacerbated the experience of loss and grief for many CYP, who were unable to access their usual the support networks. However, it is still unclear what is currently known and not known about the experiences of CYP bereaved during the SARS-CoV-2 pandemic. This review used the framework of Arksey and O'Malley and included five stages: (1) identifying the research question; (2) identifying relevant studies; (3) study selection; (4) charting the data; (5) collating, summarizing, and reporting the results. The methodological quality of the included studies was also assessed using the Critical Appraisal Skills Programme tool. The PRISMA framework was used for reporting the results. The electronic databases Medline, PsychINFO, CINAHL, and PubMed were searched for relevant articles. A total of three papers meeting the inclusion criteria were included in this review and two main themes identified: (1) support (which included sub-themes; social isolation and the impact on support; support from family and friends; wider support networks); (2) Emotional impact of bereavement during a pandemic. Access to support networks is crucial for CYP to understand and process their emotions relating to their bereavement experience. The pandemic meant that many usual support networks such as family and friends were inaccessible to CYP, who struggled to deal with their experience of grief during this time. Schools are a valuable support mechanism and can help CYP understand their emotions through open discussions about their bereavement. The limited empirical evidence currently available in this area of research demonstrates an important need to further understanding of the long-term impacts of dealing with pandemic-related loss in childhood [ABSTRACT FROM AUTHOR]

Background: The drive for patients to be actively involved in their own healthcare received significant attention during the COVID-19 pandemic. For patients living with wounds, shared care usually encompasses aspects of care planning, and wound care tasks, but the suddenness of the pandemic meant many patients were unsure how to do this sufficiently. Objectives: The aim of this project was to explore experiences of shared wound care during a pandemic from a patient and healthcare professional perspective. Methods: Semi-structured qualitative interviews were undertaken with 25 patients living with wounds and five informal carers. A healthcare professional focus group (n=5) explored experiences of providing shared care information to patients. Thematic analysis was used to analyse the data. Results: The patient and carer interviews revealed five main themes (explanation of wound and wound type; access to healthcare services and the impact of the COVID-19 pandemic; wound education; patient and carer involvement in shared care tasks; the type of wound education that would be most helpful) and eight subthemes. The healthcare professional focus group revealed three main themes (patients who could be involved in shared care; trust education and standardising guidance; supporting people to share care) and five subthemes. Conclusions: This study has highlighted the importance of targeted education for patients living with wounds and their informal carers. Standardising education and guidance for healthcare professional is important to build confidence. Early patient engagement in shared care and personalised care plans are key to maximise acceptance. [ABSTRACT FROM AUTHOR]

Background: A vast amount of wound care occurs in the community, but due to varying levels of knowledge and education, wound dressing selection and usage are not always optimal. Aim: This study aimed to investigate the effects of different forms of education alongside the introduction of a wound dressing on nurses' frequency of dressing changes in the home care setting. Method: We used three different approaches to explore the impact of wound care education undertaken across three district nursing teams. Semi-structured interviews with healthcare professionals explored the impact of education on nurses' clinical practice, decision making and confidence. Results: Reductions in overall wound dressing change frequency were observed in the group receiving the education package with training, compared with the control group. Dressing-specific education enabled staff to trust and feel confident about using the dressings, while wound care education enabled participants to apply new knowledge to their clinical practice. Discussion: This study highlights the importance of how education can provide valuable solutions to reducing unnecessary dressing changes, reducing nursing visits and dressing use and supporting healthcare professionals to feel more confident in their practice. Product-specific education and general wound care education combined can help to build confidence and support positive changes in practice. [ABSTRACT FROM AUTHOR]

Background: Wound care is a significant financial burden in healthcare and the cost of wound dressings are reported as explicit expenditures. However, there are many financial aspects associated with wound dressings that are less understood, but play an important role in understanding how to manage the wound care burden. Aim: This study explored the real-world costs of wound dressings for the management of acute and chronic wounds. Methods: A round table discussion with 6 healthcare professionals with expertise in wound care was undertaken. Results: Thematic analysis identified four main themes (supported by eight sub-themes); holistic wound management; wound dressing expenditure; specialists and generalists in wound care; and patient factors. Discussion: The real-world cost of managing wounds encompasses a variety of factors that are frequently underrepresented. A holistic approach is essential for patient health and wellbeing and managing patient expectations of wound healing. While wound dressing costs should be considered, the focus should be on choosing the right product for each patient. Simplifying the number of products available to clinicians is an important aspect of supporting individuals to treat and manage patients in their care. [ABSTRACT FROM AUTHOR]

'The SARS-Cov-2 (COVID-19) pandemic saw the introduction of safety measures such as social distancing, isolation and shielding. This has facilitated health care services transformation, particularly in tissue viability services, where a decrease in community nursing visits, limited outpatient appointments and few face-to-face GP appointments have increased the need for patients to be actively involved in their own care. Such a shift has contributed towards patients and health professionals (HCP) sharing treatment and care responsibilities to maintain the patients' health. This shift brings about its own challenges, with patients requiring a degree of knowledge and skills of wound care to be able to confidently manage their wounds. The terms self-care, shared care and supported self-management are often used to refer to patient involvement in their treatment and care but a lack of consensus around the extent of patient involvement and an absence of strategic guidelines for shared or self-management of lower limb wounds contributes towards difficulties in understanding the extent of patient involvement. This paper provides a narrative review of current literature focused on shared, self or supported self-management practices and perceptions in the management of lower limb wounds. [ABSTRACT FROM AUTHOR]

Abstract Background Growing levels of both obesity and chronic disease in the general population pose a major public health problem. In the UK, an innovative 'health and weight' cohort trials facility, the 'South Yorkshire Cohort', is being built in order to provide robust evidence to inform policy, commissioning and clinical decisions in this field. This protocol reports the design of the facility and outlines the recruitment phase methods. Method/Design The South Yorkshire Cohort health and weight study uses the cohort multiple randomised controlled trial design. This design recruits a large observational cohort of patients with the condition(s) of interest which then provides a facility for multiple randomised controlled trials (with large representative samples of participants, long term outcomes as standard, increased comparability between each trial conducted within the cohort and increased efficiency particularly for trials of expensive interventions) as well as ongoing information as to the natural history of the condition and treatment as usual. This study aims to recruit 20,000 participants to the population based South Yorkshire Cohort health and weight research trials facility. Participants are recruited by invitation letters from their General Practitioners. Data is collected using postal and/or online patient self completed Health Questionnaires. NHS numbers will be used to facilitate record linkage and access to routine data. Participants are eligible if they are: aged 16 - 85 years, registered with one of 40 practices in South Yorkshire, provide consent for further contact from the researchers and to have their information used to look at the benefit of health treatments. The first wave of data is being collected during 2010/12 and further waves are planned at 2 - 5 year intervals for the planned 20 year duration of the facility. Discussion The South Yorkshire Cohort combines the strengths of the standard observational, longitudinal cohort study design with a population based cohort facility for multiple randomised controlled trials in a range of long term health and weight related conditions (including obesity). This infrastructure will allow the rapid and cheap identification and recruitment of patients, and facilitate the provision of robust evidence to inform the management and self-management of health and weight.

Antimicrobial resistance (AMR) is a major global concern in healthcare, facilitated by a lack of newly developed antibiotics and an overreliance on those that are readily available to treat and manage infections. The appropriate use of antibiotics is vital to preventing AMR and antimicrobial stewardship (AMS) is central to ensuing clinicians have the knowledge to understand when to use antibiotics appropriately. This is particularly important in wound care, where multidisciplinary working is common, necessitated by variations in the complexity and variation of wound care. Whilst healthcare organisations may work in isolation, shared education, training and understanding, as well as shared decision making around AMR policies and procedures is fundamental to ensuring the impact of antimicrobial resistance is reduced and to understand the most appropriate and sustainable method of appropriate wound management. [ABSTRACT FROM AUTHOR]