Psychosocial impact of the COVID-19 pandemic and shielding in adults and children with early-onset neuromuscular and neurological disorders and their families: a mixed-methods study.

AIM: To describe and evaluate the psychosocial impact of the COVID-19 pandemic and measures to reduce the risk of transmission on patients with early-onset neuromuscular and neurological disorders (NMDs) and their families. DESIGN: A mixed-methods study in which data were collected between 17 September 2020 and 31 December 2020 using a semi-structured telephone questionnaire developed specifically to meet research aims, and were analysed using quantitative methods and qualitative inductive thematic analysis. PARTICIPANTS: Forty questionnaires were completed by patients with NMDs (eg, muscular dystrophies, spinal muscular atrophy) or their parent. 70% (n=28) of patients were male, aged 2-48 years. 90% (n=36) were wheelchair users; 72.5% (n=29) required long-term non-invasive or tracheostomy ventilation. RESULTS: Strict adherence to risk mitigation strategies, for example, shielding, were reported at the start of the pandemic. Over half continued some or all measures after official limitations were relaxed. 67.5% (n=27) reported changes to personal care assistance arrangements including temporary cessation of outside carers. Three themes were identified: (1) Concern regarding the health impact of COVID-19; (2) Perceptions of strategies to prevent SARS-CoV-2 transmission; (3) Psychological impact of the COVID-19 pandemic. The level and pervasiveness of frequently reported negative psychological effects, for example, anxiety and fear fluctuated, and were related to the perceived risk of COVID-19, concern about attending hospital, and perceived lack of access to intensive care management if severe COVID-19 infection occurred. Support, particularly from family and healthcare services, were considered to have positive psychosocial effects. CONCLUSIONS: Measures to reduce transmission of COVID-19 have greatly affected patients with NMDs and their families. For most, negative psychosocial impacts have and will continue to improve, but this may depend on the incidence of further pandemic waves. Consistent, up-to-date and accessible information on clinical outcomes and risk mitigation must be provided to support patients' physical and mental well-being.

The treatment burden of long-term home noninvasive ventilation.

Long-term home noninvasive ventilation has practical and psychosocial implications for individuals, families and caregivers. Exploring the impact of the workload of healthcare or "treatment burden" helps determine treatment feasibility and acceptability. https://bit.ly/39YUY2A.

ERS International Congress 2020 Virtual: highlights from the Respiratory Intensive Care Assembly.

During the virtual European Respiratory Society Congress 2020, early career members summarised the sessions organised by the Respiratory Intensive Care Assembly. The topics covered included diagnostic strategies in patients admitted to the intensive care unit with acute respiratory failure, with a focus on patients with interstitial lung disease and for obvious reasons, severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) infection. These sessions are summarised in this article, with take-home messages highlighted.

Patient eligibility for anti-fibrotic therapy in idiopathic pulmonary fibrosis can be altered by use of different sets of reference values for calculation of FVC percent predicted.

Antifibrotic drugs for idiopathic pulmonary fibrosis patients in England and Scotland are only available to those with FVC percent predicted (FVC%pred) less than or equal to 80%. The prescribing guidance does not state which set of reference values should be used and we show that a patient's FVC%pred can change by 4-6% depending on the choice of reference. We calculated FVC%pred for a group of 528 IPF patients using three different sets of reference values. 90% of patients with FVC%pred 80-85% calculated using European Community Coal and Steel (ECSC) reference values fall into the eligible range when NHANES reference values are used.

Comparative analysis of Annexin A1-formyl peptide receptor 2/ALX expression in human leukocyte subsets.

Recent studies have associated the dysregulated expression of Annexin-A1/Formyl peptide receptor 2 (FPR2/ALX) system with the development of autoimmune diseases. In this study we systematically scanned human leukocyte subsets for the presence of this pathway aiming to provide a roadmap that will help investigators to explore possible links between the development of immune related disorders and the expression of this system. Our results show that neutrophils, monocytes and NK cells express higher levels of both AnxA1 and FPR2/ALX compared to T or B cells. Further analysis of specific T cell subsets revealed higher levels in activated CD25(+) and memory CD45RO CD4 T cells compared to resting CD25(-) or naïve CD45RA CD4 T cells. Together the results expand our knowledge of the AnxA1-FPR2/ALX system in immune cells and provide new avenues for investigation into the functions of this signalling pathway in systems other than that classically described for neutrophils.