Unpacking how trust, communication and flow interact to sustain quality relationships between disabled people, family and support workers: a realist qualitative study.

Purpose: Many disabled people require support workers to complete personal care, daily tasks and participate in life roles. Due to the intimate nature of community disability support in domestic environments, understanding what facilitates positive relationships is paramount. We examined the intricate interplay of context and mechanisms that drive positive relationship outcomes for disabled people, their family members and support workers.

Disease-associated comorbidities, medication records and anthropometric measures in adults with Duchenne muscular dystrophy.

We investigated the comorbidities, associated factors, and the relationship between anthropometric measures and respiratory function and functional abilities in adults with Duchenne muscular dystrophy (DMD). This was a single-centre cross-sectional study in genetically diagnosed adults with DMD (>16 years old). Univariate and multivariate analyses identified factors associated with dysphagia, constipation, Body Mass Index (BMI), and weight.

Shining a light on the road towards conducting principle-based co-production research in rehabilitation.

Moving from participatory approaches incorporating co-design to co-production in health research involves a commitment to full engagement and partnership with people with lived experience through all stages of the research process-start to finish. However, despite the increased enthusiasm and proliferation of research that involves co-production, practice remains challenging, due in part to the lack of consensus on what constitutes co-production, a lack of guidance about the practical steps of applying this approach in respect to diverse research methods from multiple paradigms, and structural barriers within academia research landscape. To navigate the challenges in conducting co-produced research, it has been recommended that attention be paid to focusing and operationalising the underpinning principles and aspirations of co-production research, to aid translation into practice.

Understanding the Electrical Substrates Contributing to "Ablation-Resistant" Atrial Fibrillation?

Atrial fibrillation (AF) was largely ignored by cardiac electrophysiologists until it was first suggested in 1998 that it might be amenable to catheter ablation. In the 25 years since then, a vast body of knowledge has emerged, initially reporting the "hypes and hopes" that ablation was appropriate for all but more recently acknowledging that not all patients benefit from this approach. The AF "epidemic" and more holistic understanding of the complex contributors to its development question whether it is even meaningful to consider AF a single condition that is always responsive to ablation management.

Arrhythmias and cardiac MRI associations in patients with established cardiac dystrophinopathy.

Aims: Some patients with cardiac dystrophinopathy die suddenly. Whether such deaths are preventable by specific antiarrhythmic management or simply indicate heart failure overwhelming medical therapies is uncertain. The aim of this prospective, cohort study was to describe the occurrence and nature of cardiac arrhythmias recorded during prolonged continuous ECG rhythm surveillance in patients with established cardiac dystrophinopathy and relate them to abnormalities on cardiac MRI.

Functional abilities, respiratory and cardiac function in a large cohort of adults with Duchenne muscular dystrophy treated with glucocorticoids.

Background And Purpose: The transition to adult services, and subsequent glucocorticoid management, is critical in adults with Duchenne muscular dystrophy. This study aims (1) to describe treatment, functional abilities, respiratory and cardiac status during transition to adulthood and adult stages; and (2) to explore the association between glucocorticoid treatment after loss of ambulation (LOA) and late-stage clinical outcomes.

Methods: This was a retrospective single-centre study on individuals with Duchenne muscular dystrophy (≥16 years old) between 1986 and 2022.

Using the consolidated Framework for Implementation Research to integrate innovation recipients' perspectives into the implementation of a digital version of the spinal cord injury health maintenance tool: a qualitative analysis.

Background: Despite advances in managing secondary health complications after spinal cord injury (SCI), challenges remain in developing targeted community health strategies. In response, the SCI Health Maintenance Tool (SCI-HMT) was developed between 2018 and 2023 in NSW, Australia to support people with SCI and their general practitioners (GPs) to promote better community self-management. Successful implementation of innovations such as the SCI-HMT are determined by a range of contextual factors, including the perspectives of the innovation recipients for whom the innovation is intended to benefit, who are rarely included in the implementation process.

Co-design of the Spinal Cord Injury Health Maintenance Tool to Support Self-Management: A Mixed-Methods Approach.

Background: There is a lack of consumer-friendly tools to empower and support people living with spinal cord injury (SCI) to self-manage complex health needs in community. This article describes the co-design process of the new SCI Health Maintenance Tool (SCI-HMT).

Methods: Co-design of the SCI-HMT using a mixed-methods approach included a rapid review, e-Delphi surveys with range of multidisciplinary health care professionals ( = 62), interviews of participants with SCI ( = 18) and general practitioners ( = 4), focus groups ( = 3 with 7, 4, and 4 participants with SCI, respectively), design workshops with stakeholders ( = 11, 8), and end-user testing ( = 41).

Heart Rate Variability Biofeedback in Adults with a Spinal Cord Injury: A Laboratory Framework and Case Series.

Heart rate variability biofeedback (HRV-F) is a neurocardiac self-regulation therapy that aims to regulate cardiac autonomic nervous system activity and improve cardiac balance. Despite benefits in various clinical populations, no study has reported the effects of HRV-F in adults with a spinal cord injury (SCI). This article provides an overview of a neuropsychophysiological laboratory framework and reports the impact of an HRV-F training program on two adults with chronic SCI (T1 AIS A and T3 AIS C) with different degrees of remaining cardiac autonomic function.

Development of respiratory care guidelines for Duchenne muscular dystrophy in the UK: key recommendations for clinical practice.

Unlabelled: Significant inconsistencies in respiratory care provision for Duchenne muscular dystrophy (DMD) are reported across different specialist neuromuscular centres in the UK. The absence of robust clinical evidence and expert consensus is a barrier to the implementation of care recommendations in public healthcare systems as is the need to increase awareness of key aspects of care for those living with DMD. Here, we provide evidenced-based and/or consensus-based best practice for the respiratory care of children and adults living with DMD in the UK, both as part of routine care and in an emergency.

Emery-Dreifuss muscular dystrophy Type 1 is associated with a high risk of malignant ventricular arrhythmias and end-stage heart failure.

Background And Aims: Emery-Dreifuss muscular dystrophy (EDMD) is caused by variants in EMD (EDMD1) and LMNA (EDMD2). Cardiac conduction defects and atrial arrhythmia are common to both, but LMNA variants also cause end-stage heart failure (ESHF) and malignant ventricular arrhythmia (MVA). This study aimed to better characterize the cardiac complications of EMD variants.

United and flexible: a collaborative approach to early vocational rehabilitation on a spinal unit. A realist study.

Study Design: Qualitative study using realist review.

Objectives: To conceptualise how Early Intervention Vocational Rehabilitation (EIVR) functions within inpatient multidisciplinary contexts during spinal cord injury (SCI) rehabilitation.

Setting: New Zealand Spinal Unit.

Biological and JAK inhibitor therapy outcomes for severe psoriasis in trisomy 21.

Little is known about biological outcomes for severe psoriasis in trisomy 21 (T21). Our aim was to review outcomes of patients with T21 and severe psoriasis treated with biologic or Janus kinase inhibitors (JAKi). Information on demographics, co-morbidities, and therapeutic responses was retrospectively collated.

Benefits and limitations of the transfer online of Irish College of General Practitioners (ICGP) continuing medical education (CME) small group learning (SGL) during COVID-19: a national Delphi study.

Introduction: In Ireland, continuing medical education (CME) small group learning (SGL) has been shown to be an effective way of delivering CME, particularly for rural general practitioners (GPs). This study sought to determine the benefits and limitations of the relocation of this education from face to face to online learning during COVID-19.

Methods: A Delphi survey method was used to obtain a consensus opinion from a group of GPs recruited via email through their respective CME tutors, and who had consented to participate.

Recommendation to update the British Society for Cutaneous Allergy corticosteroid series.

Background: Patch testing is an important investigation when dermatitis is unresponsive to, or worsened by, topical corticosteroid treatment. There is a balance to be struck between testing too many allergens, which is expensive, time consuming and risks causing sensitization, and testing too few, which risks missing the diagnosis. The current British Society for Cutaneous Allergy (BSCA) corticosteroid series comprises eight allergens and was last updated in February 2007.

Disrupted mana and systemic abdication: Māori qualitative experiences accessing healthcare in the 12 years post-injury.

Background: Māori have been found to experience marked health inequities compared to non-Māori, including for injury. Accessing healthcare services post-injury can improve outcomes; however, longer-term experiences of healthcare access for injured Māori are unknown. This paper reports on data from the longitudinal Prospective Outcomes of Injury Study - 10 year follow up (POIS-10) Māori study in Aotearoa/New Zealand (NZ), to qualitatively understand Māori experiences of accessing injury-related healthcare services long-term.

Radiation-induced morphea of the breast-A case series.

Radiation-induced morphea (RIM) is a rare but recognized late complication of radiotherapy. It was first described in 1905, not long after the initial discovery of X-rays by Roentgen. Characterized by the deposition of excess collagen in the dermis, it results in thickening of the skin.

Early Opportunities to Explore Occupational Identity Change: Qualitative Study of Return-To-Work Experiences After Stroke.

Background: Rates of return-to-work after stroke are low, yet work is known to positively impact people's wellbeing and overall health outcomes.

Objective: To understand return-to-work trajectories, barriers encountered, and resources that may be used to better support participants during early recovery and rehabilitation.

Participants: The experiences of 31 participants (aged 25-76 years) who had or had not returned to work after stroke were explored.

Cardiac care of children with dystrophinopathy and females carrying DMD-gene variations.

Objective: We provide succinct, evidence-based and/or consensus-based best practice guidance for the cardiac care of children living with Duchenne muscular dystrophy (DMD) as well as recommendations for screening and management of female carriers of mutations in the -gene.

Methods: Initiated by an expert working group of UK-based cardiologists, neuromuscular clinicians and DMD-patient representatives, draft guidelines were created based on published evidence, current practice and expert opinion. After wider consultation with UK-cardiologists, consensus was reached on these best-practice recommendations for cardiac care in DMD.

Pembrolizumab-associated erythema nodosum in the treatment of metastatic melanoma.

A 66-year-old woman receiving pembrolizumab for metastatic melanoma presented with tender red nodules on her shins and forearms. Biopsy was consistent with erythema nodosum (EN). The eruption responded to oral minocycline and potent topical steroids.