Morag Farquhar

Background: Chronic obstructive pulmonary disease (COPD) is a progressive condition with high symptom burden. Advanced COPD management should relieve symptoms, optimise daily functioning and reduce carer burden, yet there is limited enactment of policy-advocated person-centred approaches to care and support. The Living with Breathlessness Study sought to establish evidence-based recommendations to inform a new paradigm to improve care and support in advanced COPD. Methods: Comprehensive multiple-perspective longitudinal evidence was collected on care, support, functioning and needs in advanced COPD from a population-based cohort of over 500 patients, their unpaid/family carers and health care professionals through semi-structured interviews and validated outcome measures over an 18-month period. Quantitative data analysed using standard descriptive statistics, numerical and univariate analyses, and qualitative data using a Framework approach. Recommendations were then generated through three linked strategies: (1) an expert multidisciplinary group, (2) a stakeholder workshop and (3) a stakeholder survey. Results: Six inter-related recommendations emerged, linked by the concept of proactive person-centred care, supported by action points to enable delivery. Recommendations in brief: (1) stop focusing on the challenge of prognostication as a barrier to meeting need, (2) change targets to incentivise person-centred care, (3) enable identification of patient support needs, (4) identify and support carers, (5) identify and respond to psychological morbidity, (6) change societal understandings of COPD, breathlessness, palliative care and informal carers. The recommendations garnered significant support from stakeholders, with caution regarding ease of implementation. Conclusions: Enactment of the resulting six evidence-based recommendations, through their action points, could inform a new paradigm to improve care and support in advanced COPD recognising the slow relentless progression of non-malignant disease, and its effect on patients and their carers. They hold potential for other patients and unpaid/family carers who are living in between conventional disease management and end-of-life care, and for those HCPs striving to support them.

Most people living with dementia are cared for at home by unpaid family carers who experience substantially higher rates of anxiety and depression compared to the general population: approximately ...

People with chronic obstructive pulmonary disease (COPD) face increased risk of social isolation and loneliness. However, social dimensions are frequently overlooked in respiratory care. We aimed to explore the role of social connection in living with COPD, including influences on health and function. We conducted a reflexive thematic analysis of semi-structured interviews with 19 people with COPD (median age 78 years [range 58–88]; 14 with severe airflow obstruction). Three themes were identified: social connection supports COPD self-management, the “triple threat” of COPD to social connection, and the inseparable nature of social health. Participants described how worsening symptoms, particularly breathlessness, contribute to disconnection through physical restrictions, psychological reactions, and societal unawareness, with negative impacts on self-management and wider physical and psychological health. We conclude that social connections become increasingly valuable, yet increasingly difficult to maintain, as COPD progresses. Supporting individuals to maintain connections within a biopsychosocial approach may unlock wider health benefits.

Families of individuals who require inpatient neurorehabilitation following brain injury often have expectations of recovery that differ from treating healthcare professionals. This can hinder collaboration and create tension. This study aimed to explore healthcare professionals' experiences of family expectations and identify ways to improve practice. Semi-structured interviews were conducted with healthcare professionals at a Level 1 neurorehabilitation unit in England. This National Health Service unit is commissioned to see patients with highly complex needs following a brain injury. Data were analyzed using reflexive thematic analysis. Eighteen healthcare professionals from a range of disciplines participated, with physiotherapists most highly represented (n = 5). Analysis generated three key themes: 'the promise of rehabilitation,' 'confidence with complexity,' and 'developing mutual understanding.' Participants described differing expectations as a common and emotionally demanding aspect of their work, often complicated by prognostic uncertainty. Healthcare professionals recognized hope as a valid and often protective response to a life-altering brain injury. Improved mutual understanding may require a multi-component intervention to aid communication pre-admission, identify family support needs, support patients requiring disability management, provide emotional support to HCPs, and to address uncertainty. It is critical to first deepen understanding of family and patient perspectives on this topic.

Introduction Motor neuron disease/amyotrophic lateral sclerosis (MND/ALS/ALS) is an incurable disease which leads to muscle weakness that worsens over time. MND/ALS is highly heterogeneous in its presentation, with many people experiencing a rapidly progressive trajectory of symptoms. Many people living with MND/ALS (plwMND/ALS) experience a combination of flaccidity and spasticity of the muscles involved in speech, swallowing, breathing and coughing. This makes it challenging to deal with the saliva and mucous (‘secretions”) produced by the body. Failure to manage these problems effectively can lead to accumulation and aspiration of secretions, which may cause pneumonia and respiratory insufficiency. Knowing the best way to treat this problem is a challenge. Systematic reviews report substantive ongoing uncertainty regarding secretions management (SM). Little is known about the comparative effectiveness of secretion management interventions, their impact on quality of life and acceptability for plwMND/ALS and their unpaid/family. Methods and analysis A complex intervention systematic review of SM for plwMND/ALS and/or their carers will be conducted using an iterative logic model approach, designed in accordance with the principles and guidance laid out in a series of articles published by the Agency for Healthcare Research and Quality on complex intervention reviews . Eight electronic databases will be searched for publications between 1996 and present: Ovid Embase, EBSCO CINAHL, EBSCO Academic Search Ultimate, Scopus, EBSCO PsycInfo, Ovid MEDLINE and the Social Sciences Citation Index. This will be supplemented by hand searching of reference lists of included studies. Two reviewers will independently screen the results for potentially eligible studies using AS Review Lab (a semi-automated machine learning tool). Study selection, data extraction and risk of bias assessment, using Gough’s Weight of Evidence Framework, will be independently performed by two reviewers. A framework thematic synthesis approach will be employed to analyse and report quantitative and qualitative data. The reporting will be conducted in line with the Preferred Reporting Items for Systematic Review and Meta-Analysis Complex Intervention Extension Statement and Checklist. Ethics and dissemination This review will involve the secondary analysis of published information; therefore, ethical approvals are not required. Dissemination will be via presentation at scientific meetings, presentations to MND/ALS support groups and publications in peer-reviewed journals. PROSPERO registration number CRD42025102364.

Background: Young carers support family members with a range of health issues but with known detrimental impacts on young carers themselves suggesting they require support. The Carer Support Needs Assessment Tool (v3.0) is a well-established tool enabling unpaid/family carers to identify and express their support needs to healthcare professionals. However its comprehensiveness for young carers is unknown. Aim: To explore whether the Carer Support Needs Assessment Tool (v3.0) covers the support needs of young carers identified within published literature. Design: Systematic literature search and narrative review. English language studies were identified against predetermined inclusion/exclusion criteria through searching databases and reference lists of included papers. Papers were critically appraised, and data extracted and synthesised by three reviewers. Identified needs were mapped to the Carer Support Needs Assessment Tool (v3.0) questions. Data sources: CINAHL (EBSCO), EMBASE (Ovid), Applied Social Science Index and Abstract, Medline (EBSCO), American Psychological Association, PsycINFO and the Cochrane Database of Systematic Reviews (January 2010–December 2024). Result: Thirty-four papers were included. Synthesis of findings confirmed that young carers have (often unmet) support needs relating to information, emotional distress, relationships (including parent-child relationships), accessing services and education. Mapping these to the Carer Support Needs Assessment Tool (v3.0) questions suggested it requires adapting to ensure coverage of education and parent-child relationships. Conclusion: Young carers can require support across many areas, suggesting they would benefit from identifying and expressing their needs to healthcare professionals. The Carer Support Needs Assessment Tool Intervention could enable this but requires identified adaptations to the v3.0 tool.

Aims: To evaluate the effect of exercise-based cardiac rehabilitation (CR) on the severity of angina, health-related quality of life (HRQoL), and exercise capacity in adults living with microvascular angina (MVA). Methods and results: Fourteen online databases were searched to identify randomized controlled trials (RCTs) comparing adults with MVA receiving CR to those receiving a control intervention involving no exercise. Meta-analyses using random-effects models were used to calculate mean differences or standardized mean differences (SMD). Of 15 873 reports identified, 5 studies (222 participants) were included. Risk of bias for all outcomes were judged as ‘some concerns’ or ‘high’. Mean ages ranged from 51 to 64 years, and 97.3% were women. Meta-analysis of CR’s effect on the severity of angina was not feasible due to limited data. Meta-analysis on HRQoL was conducted at the domain level of Short Form-36 questionnaire (two RCTs; n = 76) and on exercise capacity measured by peak VO2 (three RCTs; n = 101). The HRQoL outcome was classified as ‘very low certainty’, indicating very little confidence in the effect estimates. The meta-analysis on exercise capacity showed a clinically meaningful change in peak VO2 in favour of CR, with a 4.16 mL/kg/min increase in peak VO2 (SMD of 1.06, 95% CI −0.7 to 2.19, very low certainty). Conclusion: CR may improve exercise capacity in patients living with MVA compared to controls; however, the evidence is very uncertain. High-quality RCTs are needed to rigorously determine the impact of CR on the severity of angina, HRQoL, and exercise capacity in patients living with MVA.