Extracorporeal photopheresis (ECP) in the treatment of chronic lung allograft dysfunction (CLAD): a prospective, multicentre, open-label, randomised controlled trial studying the addition of ECP to standard care in the treatment of bilateral lung transplant patients with CLAD (E-CLAD UK).

BACKGROUND: Long-term survival after lung transplantation is limited compared with other organ transplants. The main cause is development of progressive immune-mediated damage to the lung allograft. This damage, which can develop via multiple immune pathways, is captured under the umbrella term chronic lung allograft dysfunction (CLAD). Despite the availability of powerful immunosuppressive drugs, there are presently no treatments proven to reverse or reliably halt the loss of lung function caused by CLAD. The aim of the E-CLAD UK trial is to determine whether the addition of immunomodulatory therapy, in the form of extracorporeal photopheresis (ECP), to standard care is more efficacious at stabilising lung function in CLAD compared with standard care alone. METHODS AND ANALYSIS: E-CLAD UK is a Phase II clinical trial of an investigational medicinal product (Methoxsalen) delivered to a buffy coat prepared via an enclosed ECP circuit. Target recruitment is 90 bilateral lung transplant patients identified as having CLAD and being treated at one of the five UK adult lung transplant centres. Participants will be randomised 1:1 to intervention plus standard of care, or standard of care alone. Intervention will comprise nine ECP cycles spread over 20 weeks, each course involving two treatments of ECP on consecutive days. All participants will be followed up for a period of 24 weeks.The primary outcome is lung function stabilisation derived from change in forced expiratory volume in one second and forced vital capacity at 12 and 24 weeks compared with baseline at study entry. Other parameters include change in exercise capacity, health-related quality of life and safety. A mechanistic study will seek to identify molecular or cellular markers linked to treatment response and qualitative interviews will explore patient experiences of CLAD and the ECP treatment.A patient and public advisory group is integral to the trial from design to implementation, developing material to support the consent process and interview materials. ETHICS AND DISSEMINATION: The East Midlands-Derby Research Ethics Committee has provided ethical approval (REC 22/EM/0218). Dissemination will be via publications, patient-friendly summaries and presentation at scientific meetings. TRIAL REGISTRATION NUMBER: EudraCT number 2022-002659-20; ISRCTN 10615985.

'In the shower crying but we came back in the following day and did it all again'. Distress and resilience in care home staff during the COVID-19 pandemic- A qualitative interview study.

BACKGROUND: Care homes (long-term care facilities) were profoundly impacted early in the COVID-19 pandemic, both in terms of resident mortality and restrictions for infection control. This study investigated the impact on the emotional well-being of care home staff of challenges faced at this time, and the strategies used to manage them. METHODS: Semi-structured interviews conducted October 2020-June 2021 with care home staff and health service staff working with them explored the impact of the early waves of the COVID-19 pandemic (March 2020-June 2021). Interview data were analysed using reflexive thematic analysis. RESULTS: Interview participants were 16 care home staff and 10 health service staff. Analysis generated four key themes: 1)Anxiety and distress, 2)Overwhelming workload, 3)Pulling through; and 4)Resilience in a time of crisis. Care home staff experienced Anxiety and distress due to uncertainty of what to expect; witnessing illness and deaths of residents; concerns regarding their own health, and sometimes feeling their work was under-recognised. They also experienced an Overwhelming workload due to infection control measures, caring for sick residents and reduction in external healthcare support. Our theme of Pulling through reflects the peer support and problem-solving strategies with which care home staff managed the impact of the pandemic, along with a sense of responsibility and meaning towards their work. An overarching theme of Resilience in a time of crisis drew on the other three themes and describes how many staff managed, maintained, and often increased their work despite the challenges of the pandemic. Participants also described increasing emotional fatigue as the pandemic continued. CONCLUSIONS: This paper builds on literature on the emotional impact of the pandemic on care home staff, also exploring ways that staff responded to this impact. These findings can help inform planning for future crises including disease outbreaks, and raise important questions for further work to develop pandemic preparedness in care homes and beyond. They also raise wider questions about the current cultural status of care work, which may have exposed care home staff to greater risk of distress, and which contrasts with the professionalism and responsibility shown by staff in response to pandemic challenges.

Assessing quality of life in solid organ transplant recipients: A systematic review of the development, content, and quality of available condition- and transplant-specific patient-reported outcome measures.

PURPOSE: We aimed to identify the condition- and transplant-specific patient-reported outcome measures (PROMs) available to measure quality of life (QoL) in solid organ transplant (SOT) recipients, examine their development and content, and critically appraise the quality of their measurement properties, to inform recommendations for clinical and research use. METHODS: We systematically searched MEDLINE, Embase, CINAHL, PsycINFO, Cochrane CENTRAL, and Scopus from inception to 27th January 2023. Search hits were screened for eligibility by two independent reviewers; papers reporting the development and/or validation of condition- and transplant-specific PROMs measuring QoL in adult SOT recipients were considered eligible. We abstracted and synthesised data on PROM characteristics, development (item generation and/or reduction), and content (QoL dimensions). Quality appraisal and synthesis were informed by the Consensus-based Standards for the Selection of Health Measurement Instruments (COSMIN) guidelines, and included methodological and quality assessment of measurement properties, GRADE levels of evidence, feasibility and interpretability. RESULTS: We identified 33 papers reporting 26 QoL PROMs validated in SOT recipients (kidney n = 10 PROMs; liver n = 6; lung n = 3; heart n = 2; pancreas n = 1; multiple organs n = 4). Patient discussions (n = 17 PROMs) and factor analysis (n = 11) were the most common item generation and reduction techniques used, respectively. All PROMs measured ≥3 of nine QoL dimensions (all measured emotional functioning); KDQoL-SF and NIDDK-QA measured all nine. Methodological quality was variable; no PROM had low evidence or better for all measurement properties. All PROMs were COSMIN recommendation category 'B', primarily because none had sufficient content validity. CONCLUSIONS: There are many condition- and transplant-specific QoL PROMs validated in SOT recipients, particularly kidney. These findings can help inform PROM selection for clinicians and researchers. However, caution is required when adopting measures, due to the substantial heterogeneity in development, content, and quality. Each PROM has potential but requires further research to be recommendable. Greater consideration of patient and professional involvement in PROM development in this setting is needed to ensure sufficient content validity.

Identity construction in the very old: A qualitative narrative study.

People are living longer internationally, with a growing number experiencing very old age (≥95 years). Physical, psychological and social changes can challenge one's sense of self and disrupt existing identities. However, experiences of the very old in society are seldom researched and how they construct identity and negotiate a sense of self is little understood. Our study focuses on participants aged >95 years to understand how identity is conceptualised to negotiate a continued place in society. Qualitative interviews with 23 people were thematically analysed, underpinned by Positioning Theory. Five themes were generated: A contented life; reframing independence; familial positioning; appearance and physical wellbeing; reframing ill health. Participants saw themselves as largely content and, despite their world becoming smaller, found pleasure in small routines. Perceptions of self were reframed to maintain autonomy within narrow parameters. Past relationships and experiences/events were drawn on to make sense of ongoing ways of living. There were tensions around feelings of loss of autonomy and independence, with some valuing these over issues such as safety. This sometimes conflicted with views of others and small acts of resistance and subversion were acted out to maintain some sense of control. However, participants minimised progressive ill health. Findings provide insight into how the very old may utilise identity to negotiate, acquiesce, resist and challenge the world around them.

Views of Care at End of Life: A Secondary Analysis of Online Feedback Using Care Opinion.

Although there are studies on the use of social media and palliative and end-of-life care (PEOLC), there are no studies specifically investigating the content of online public feedback about PEOLC services. This study sought to understand experiences of end-of-life care provided in hospitals in the West of Scotland by exploring the main themes within the content of stories posted on a nationally endorsed nonprofit feedback online platform, Care Opinion, within a 2-year period. We used "Appreciative Inquiry" as a theoretical framework for this study to determine what works well in end-of-life care, while also identifying areas for further improvement. Of the 1428 stories published on "Care Opinion" from March 2019 to 2021 regarding hospitals in the West of Scotland, 48 (3.36%) were related to end-of-life care, of which all were included in data analysis. Using the software package NVivo and thematic analysis, we identified 4 key themes. We found that people overwhelmingly posted positive feedback about their experiences with end-of-life care. People reported positively about staff professionalism in providing compassionate and person-centered care to meet their loved ones needs at end of life. Other experiences of care related to challenges facing healthcare services, particularly during the COVID-19 pandemic. Quality appraisal of staff responses highlighted areas for improving feedback. This study can add to the aim of improving staff response to people's concerns about end-of-life care. This study has provided a novel perspective of patients' experiences of end-of-life care in hospitals in the West of Scotland. Novel insights were the appreciation of quality of care, staff professionalism, effective communication, and meeting patient's needs at end-of-life particularly by nursing staff.

Experiences of a National Early Warning Score (NEWS) intervention in care homes during the COVID-19 pandemic: a qualitative interview study.

BACKGROUND: The COVID-19 pandemic has taken a heavy toll on the care home sector, with residents accounting for up to half of all deaths in Europe. The response to acute illness in care homes plays a particularly important role in the care of residents during a pandemic. Digital recording of a National Early Warning Score (NEWS), which involves the measurement of physical observations, started in care homes in one area of England in 2016. Implementation of a NEWS intervention (including equipment, training and support) was accelerated early in the pandemic, despite limited evidence for its use in the care home setting. OBJECTIVES: To understand how a NEWS intervention has been used in care homes in one area of North-East England during the COVID-19 pandemic, and how it has influenced resident care, from the perspective of stakeholders involved in care delivery and commissioning. METHODS: A qualitative interview study with care home (n=10) and National Health Service (n=7) staff. Data were analysed using thematic analysis. RESULTS: Use of the NEWS intervention in care homes in this area accelerated during the COVID-19 pandemic. Stakeholders felt that NEWS, and its associated education and support package, improved the response of care homes and healthcare professionals to deterioration in residents' health during the pandemic. Healthcare professionals valued the ability to remotely monitor resident observations, which facilitated triage and treatment decisions. Care home staff felt empowered by NEWS, providing a common clinical language to communicate concerns with external services, acting as an adjunct to staff intuition of resident deterioration. CONCLUSIONS: The NEWS intervention formed an important part of the care home response to COVID-19 in the study area. Positive staff perceptions now need to be supplemented with data on the impact on resident health and well-being, workload, and service utilisation, during the pandemic and beyond.

Future-proofing the primary care workforce: A qualitative study of home visits by emergency care practitioners in the UK.

BACKGROUND: Broadening the skill-mix in general practice is advocated to build resilience into the primary care workforce. However, there is little understanding of how extended-scope practitioners from different disciplines, such as paramedicine and nursing, embed into roles traditionally ascribed to general practitioners (GPs). OBJECTIVES: This study sought to explore patients' and professionals' experiences of a primary care home visiting service delivered by emergency care practitioners (ECPs), in place of GPs; to determine positive impacts/unintended consequences and establish whether interdisciplinary working was achieved. METHODS: Three practices in England piloted an ECP (extended-scope practitioners with a paramedic or nursing background) home visiting service (November 2018-March 2019). Following the pilot, focus groups were conducted with each of the three primary healthcare teams (14 participants, including eight GPs), and one with ECPs (five participants) and nine individual patient interviews. Data were analysed using a modified framework approach. RESULTS: The impact of ECP home visiting on GP workload and patient care was perceived as positive by patients, GPs and ECPs. Initial preconceptions of GPs and patients about the ECP role and expertise, and reservations about the appropriacy of ECPs for home visiting, were perceived to have been overcome by the expertise and interpersonal skills of ECPs. Fostering a culture of collaboration between ECPs and GPs was instrumental to remodelling professional boundaries at the practice level. CONCLUSION: Broadening the skill-mix to incorporate extended-scope practitioners such as ECPs, to deliver primary care home visiting, presents an opportunity to increase resilience in the general practice workforce.

Implementation of the National Early Warning Score in UK care homes: a qualitative evaluation.

BACKGROUND: The National Early Warning Score (NEWS) is a tool for identifying and responding to acute illness. When used in care homes, staff measure residents' vital signs and record them on a tablet computer, which calculates a NEWS to share with health services. This article outlines an evaluation of NEWS implementation in care homes across one clinical commissioning group area in northern England. AIM: To identify challenges to implementation of NEWS in care homes. DESIGN AND SETTING: Qualitative analysis of interviews conducted with 15 staff members from six care homes, five health professionals, and one clinical commissioning group employee. METHOD: Interviews were intended to capture people's attitudes and experiences of using the intervention. Following an inductive thematic analysis, data were considered deductively against normalisation process theory constructs to identify the challenges and successes of implementing NEWS in care homes. RESULTS: Care home staff and other stakeholders acknowledged that NEWS could enhance the response to acute illness, improve communication with the NHS, and increase the confidence of care home staff. However, the implementation did not account for the complexity of either the intervention or the care home setting. Challenges to engagement included competing priorities, insufficient training, and shortcomings in communication. CONCLUSION: This evaluation highlights the need to involve care home staff and the primary care services that support them when developing and implementing interventions in care homes. The appropriateness and value of NEWS in non-acute settings requires ongoing monitoring.

Distribution of the National Early Warning Score (NEWS) in care home residents.

BACKGROUND: the National Early Warning Score (NEWS) is a tool based on vital signs that aims to standardise detection of, and response to, clinical deterioration in adults. NEWS has been adopted in hospitals but not adapted for other settings. This study aimed to explore the feasibility of measuring the NEWS in care homes and describe the distribution of NEWS readings amongst care home residents. METHODS: descriptive analysis of all NEWS readings recorded in a 30-month period (2016-19) across 46 care homes in one Clinical Commissioning Group in England. Comparisons were made between measurements taken as a routine reading and those prompted by concern about acute illness. RESULTS: a total of 19,604 NEWS were recorded from 2,424 older adults (≥65 years; mean age 85). Median NEWS was 2. Two thirds (66%) of residents had a low NEWS (≤2), and 28% had a score of 0. Of the total NEWS readings, 6,277 (32%) were known to be routine readings and 2,256 (12%) were measured because of staff concerns. Median NEWS was 1 for routine and 2 for concern recordings. Overall, only 12% of NEWS were high (≥5), but a higher proportion were elevated when there were concerns about acute illness (18%), compared with routine recordings (7%). CONCLUSIONS: use of NEWS in care homes appears to be feasible. The majority of NEWS were not elevated, and the distribution of scores is consistent with other out-of-hospital settings. Further work is required to know if NEWS is triggering the most appropriate response and improving care home resident outcomes.

Absence of holistic sexual health understandings among men and women in deprived areas of Scotland: qualitative study.

BACKGROUND: There is a growing evidence base for the need for a holistic approach to sexual health improvement, but the challenges for realising this in the 'real world' may be harder in some communities than others. We examined sexual health understandings and behaviours among adult men and women in deprived areas of Scotland. METHODS: Thematic analysis, using the constant comparative method, of qualitative, semi-structured in-depth interviews with 19 men and 16 women aged 18-40 years from the most deprived areas of Glasgow, Edinburgh, Dundee, and three Highland towns. RESULTS: Even though most had been shown images designed to facilitate discussion about sexual consent and verbal/physical abuse, when first asked, participants overwhelmingly equated 'sexual health' with the avoidance of sexually transmitted infections (STIs) and pregnancy. Most of the women interviewed went on to locate their accounts of sexual health within a broader, social account of relationships that in an ideal world, in contrast with their everyday lives, were based on respect and freedom from violence. They expressed desires for more positive relationships, based on open communication and trust, choice and freedom from coercion. A few men did accept a broader definition of sexual health, but others actively resisted it and placed the onus to enact choices and freedom from coercion on women rather than men. CONCLUSIONS: In the first UK study to examine understandings of holistic sexual health among adults living in deprived areas, we found a disjuncture between men and women. These findings suggest that, as a society, we are failing to equip people to enhance their own, and others', sexual health and wellbeing in its broadest sense. New efforts to emphasise the breadth of sexual health are required, but addressing these complex issues, especially where there are negative underlying gender norms to challenge, will require multi-level interventions targeting individual, community and system levels.

Exploring masculinities, sexual health and wellbeing across areas of high deprivation in Scotland: The depth of the challenge to improve understandings and practices.

Within and across areas of high deprivation, we explored constructions of masculinity in relation to sexual health and wellbeing, in what we believe to be the first UK study to take this approach. Our sample of 116 heterosexual men and women age 18-40 years took part in individual semi-structured interviews (n = 35) and focus group discussions (n = 18), across areas in Scotland. Drawing on a socio-ecological framework, findings revealed experience in places matter, with gender practices rooted in a domestically violent milieu, where localised, socio-cultural influences offered limited opportunities for more egalitarian performances of masculinity. We discuss the depths of the challenge in transforming masculinities in relation to sexual health and wellbeing in such communities.

Qualitative systematic review of barriers and facilitators to self-management of chronic obstructive pulmonary disease: views of patients and healthcare professionals.

Self-management interventions for chronic obstructive pulmonary disease (COPD) can improve quality of life, reduce hospital admissions, and improve symptoms. However, many factors impede engagement for patients and practitioners. Qualitative research, with its focus on subjective experience, can provide invaluable insights into such factors. Therefore, a systematic review and synthesis of qualitative evidence on COPD self-management from the perspective of patients, carers, and practitioners was conducted. Following a systematic search and screening, 31 studies were appraised and data extracted for analysis. This review found that patients can adapt to COPD; however, learning to self-manage is often a protracted process. Emotional needs are considerable; frustration, depression, and anxiety are common. In addition, patients can face an assortment of losses and limitations on their lifestyle and social interaction. Over time, COPD can consume their existence, reducing motivation. Support from family can prove vital, yet tinged with ambivalence and burden. Practitioners may not have sufficient time, resources, or appropriate skills or confidence to provide effective self-management support, particularly in regard to patients' psychosocial needs. This can compound patients' capability to engage in self-management. For COPD self-management to be effective, patients' psychosocial needs must be prioritised alongside medication and exacerbation management. In addition, patients' personal beliefs regarding COPD and its management should be reviewed periodically to avoid problematic behaviours and enhance positive adaptions to the disease. Patients with COPD are not a homogenous group and no one intervention will prove effective for all. Finally, practitioners require greater education, training, and support to successfully assist patients.

Understanding the factors affecting self-management of COPD from the perspectives of healthcare practitioners: a qualitative study.

Self-management is recognised as an essential criteria for the provision of high quality care for chronic obstructive pulmonary disease (COPD). The management of COPD is usually delivered by a wide range of healthcare practitioners. This study aimed to understand the factors affecting self-management of COPD from the perspectives of the different multidisciplinary healthcare teams involved in COPD care. Semi-structured interviews were conducted with participants from primary care, specialist respiratory and pulmonary rehabilitation (PR) teams. Purposive sampling and snowballing were employed in participant recruitment. All interviews were audio-recorded and transcribed verbatim and data were analysed thematically. A total of 20 participants (eight primary care practitioners, seven respiratory specialists and five PR practitioners) were interviewed until data saturation was reached. Participants identified a range of complex and interrelated factors affecting COPD self-management that were grouped into three broad categories-patient, practitioner and organisational/system-level factors. Patient-level factors were predominantly considered as barriers, with COPD knowledge and understanding, and the individual patients' life circumstances/context being the most prominent issues. Practitioner-level factors identified were practitioners' speciality, interest and experience in respiratory conditions as the overarching factor that influenced how self-management was understood and practiced. A number of organisational/system-level factors were identified by all practitioners, including inconsistency of referral pathways and the wide variations of different self-management planning tools. Factors affecting self-management of COPD across these three levels need to be tackled equally in order to improve the effectiveness of interventions and to embed and integrate self-management support approaches into routine practice. CHRONIC LUNG DISEASE: A BALANCED APPROACH FOR IMPROVED SELF-MANAGEMENT: Better co-ordination between healthcare services, practitioners and patients may help improve self-management for chronic lung disease. Self-management is crucial for patients with chronic obstructive pulmonary disease (COPD), but it can be difficult for healthcare workers to monitor and support patient progress. Oladapo Ogunbayo at Newcastle University, UK, and co-workers conducted interviews with healthcare practitioners to explore perceived barriers to successful self-management of COPD. Three distinct categories emerged; those at patient level, practitioner level and organisational level, the needs of which should be carefully balanced to improved self-management. Patient knowledge and understanding of COPD, alongside individual life circumstances, were often barriers to effective self-care. Those practitioners with specialist respiratory knowledge took a more holistic approach to self-management than their primary care counterparts. A lack of continuity between services and across self-management planning tools presented further barriers.

Features of self-management interventions for people with COPD associated with improved health-related quality of life and reduced emergency department visits: a systematic review and meta-analysis.

BACKGROUND: Self-management interventions (SMIs) are recommended for individuals with COPD to help monitor symptoms and optimize health-related quality of life (HRQOL). However, SMIs vary widely in content, delivery, and intensity, making it unclear which methods and techniques are associated with improved outcomes. This systematic review aimed to summarize the current evidence base surrounding the effectiveness of SMIs for improving HRQOL in people with COPD. METHODS: Systematic reviews that focused upon SMIs were eligible for inclusion. Intervention descriptions were coded for behavior change techniques (BCTs) that targeted self-management behaviors to address 1) symptoms, 2) physical activity, and 3) mental health. Meta-analyses and meta-regression were used to explore the association between health behaviors targeted by SMIs, the BCTs used, patient illness severity, and modes of delivery, with the impact on HRQOL and emergency department (ED) visits. RESULTS: Data related to SMI content were extracted from 26 randomized controlled trials identified from 11 systematic reviews. Patients receiving SMIs reported improved HRQOL (standardized mean difference =-0.16; 95% confidence interval [CI] =-0.25, -0.07; P=0.001) and made fewer ED visits (standardized mean difference =-0.13; 95% CI =-0.23, -0.03; P=0.02) compared to patients who received usual care. Patients receiving SMIs targeting mental health alongside symptom management had greater improvement of HRQOL (Q=4.37; P=0.04) and fewer ED visits (Q=5.95; P=0.02) than patients receiving SMIs focused on symptom management alone. Within-group analyses showed that HRQOL was significantly improved in 1) studies with COPD patients with severe symptoms, 2) single-practitioner based SMIs but not SMIs delivered by a multidisciplinary team, 3) SMIs with multiple sessions but not single session SMIs, and 4) both individual- and group-based SMIs. CONCLUSION: SMIs can be effective at improving HRQOL and reducing ED visits, with those targeting mental health being significantly more effective than those targeting symptom management alone.

Development and evaluation of a nurse-led, tailored stroke self-management intervention.

BACKGROUND: Community nurses are well placed to promote and support stroke survivors to engage in self-management. The aim of this study was to develop a stroke self-management intervention that could be tailored towards stroke survivors' self-management needs, goals and levels of activation, in the first year post-stroke. METHODS: Mixed method study, designed in accordance with the British Medical Research Council's (MRC) guidance for the development and evaluation of complex interventions. The intervention was developed and evaluated in two phases. The intervention was underpinned by the theoretical concept of patient activation and was developed based on a review of published research on stroke self-management interventions and qualitative interviews and focus groups (phase 1). It was evaluated using qualitative interviews and focus groups with stroke survivors and stroke nurses (phase 2). Participants comprised 26 stroke survivors, between 3 and 12 months post stroke and 16 stroke nurses, from across three NHS Boards in Scotland. RESULTS: The intervention consisted of a tailored self-management action plan, incorporating an individualised assessment of stroke survivor's readiness to self-manage (using the Patient Activation Measure), goal setting and motivational interviewing. Evaluation showed that many of the individual components of the intervention were perceived as feasible and acceptable to both stroke survivors and stroke nurses. CONCLUSIONS: To our knowledge, this is the first UK study to explore the use of patient activation as a theoretical underpinning in stroke self-management research and to involve stroke survivors and stroke nurses in the design and development of a tailored, person-centred stroke self-management support intervention. The study findings provide the first step in understanding how to effectively develop and deliver stroke self-management support interventions to stroke survivors living at home in the first year following stroke. Further work is needed to develop and refine the intervention and identify how to effectively embed it into nurses' routine clinical practice.