Roxanne Morin Parslow

Patients with hidradenitis suppurativa experience frequent pain which affects mood, quality of life, relationships and physical activity. Surveys and focus groups revealed that dermatologists rank pain management importance more highly than pain specialists and healthcare professionals in primary care but that they lack confidence in managing it. This study highlights the need for improved pain management education for dermatologists, multidisciplinary care pathways and better coordination between dermatology and primary care to support patients.

Background: Compassionate Healthcare In Action (CHIA) is a new questionnaire to measure patient experiences of compassionate care, with a particular focus on observable behaviours. It has been designed to address gaps in currently available metrics. It is generalisable across healthcare contexts and has been developed with patient and public involvement throughout. The present study sought to build on earlier development to evaluate the CHIA's face validity, perform item reduction, establish dimensionality, validity and reliability. Methods: Face validity was assessed via cognitive interviews with UK healthcare service users. Interviews used a Three‐Step Test Method to understand how CHIA items were used, and which items were considered most/least important in measuring patient experiences of compassionate care (Study 1). Cross‐sectional survey data were analysed using inter‐item correlations, item discrimination indexes, item and local dependency analyses and exploratory factor analysis. Statistical analyses were combined with cognitive interview data and panel reviewed to inform item reduction (Study 2). A final cross‐sectional survey corroborated single‐factor dimensionality through confirmatory factor analysis alongside establishing reliability and validity (Study 3). Results: 21 cognitive interviews established face validity and identified items with stronger face validity (Study 1). These results were combined with survey analyses ( n = 311). Seven items were removed resulting in a 14‐item CHIA demonstrating a single factor structure (Study 2). In Study 3, further survey analysis ( n = 301) reinforced results showing a strong unidimensional structure, internal consistency, test‐retest reliability and validity: content, face, convergent and discriminant. Conclusions: The CHIA is a brief and generalisable metric that evaluates patient perceptions of compassionate care they receive. It has been robustly developed and has strong psychometric properties. The CHIA shows promise for supporting healthcare services to evaluate and improve their care. Further research could examine the CHIA in different contexts and populations. Patient or Public Contribution: Lived experience consultants supported prior CHIA development papers. In this paper a lived experience consultant (experience of physical and mental healthcare services) was involved in reviewing methodology and materials, advising on and helping with recruitment, contributing to review panel discussions, reviewing and authoring this manuscript. Additionally, methods throughout sought to amplify the voices of diverse populations who could complete the CHIA.

Introduction: Using the James Lind Alliance (JLA) methodology, we established a Priority Setting Partnership (PSP) to identify the most important unanswered research questions in childhood food allergy. This approach places those directly affected, those with food allergy, their parents/carers, and healthcare professionals at the centre of the process. Methods: A multidisciplinary steering group ( n = 19 people) oversaw the PSP. Research uncertainties were collected through a UK‐wide online survey distributed to children, young people and adults with food allergy, their parents/carers, and healthcare professionals working in food allergy. A focus group was conducted with seven children aged 8–11 years with food allergy to ensure inclusion of their perspectives. Submitted questions were reviewed, combined into summary questions, and checked against existing evidence to confirm that they represented genuine uncertainties. An interim prioritisation survey was used to rank questions, with equal weighting given to each stakeholder group. A final facilitated workshop used a nominal group technique to agree on the top 10 research priorities. Results: In total, 916 respondents submitted 2563 questions. After removing out‐of‐scope and already answered questions, an interim prioritisation survey was completed by 1087 participants. The final workshop involved 29 participants, including young people ( n = 3), young adults ( n = 4), parents ( n = 7) and multidisciplinary healthcare professionals ( n = 15), who agreed on the top 10 questions. These cover prevention, early diagnosis, treatment, causes, eating out, safety in care settings, impact, emergency treatment, and awareness of food allergy. There was strong consensus from the final workshop across all attendees that prevention should be the number one priority. Conclusion: Using a rigorous, transparent, and person‐centred approach, we have identified the most important research priorities in childhood food allergy. They highlight the depth and breadth of research required to improve the prevention, diagnosis, treatment, and broader impacts of food allergy on children, families, and carers who live with this condition.

Polypharmacy is a major challenge for patient safety and effective resource use. High-quality evidence supporting polypharmacy management is lacking. To develop, optimise and evaluate a primary care complex intervention for reducing medically defined potentially inappropriate prescribing among patients experiencing polypharmacy. Phase 1: Qualitative interviews and focus groups with patients and professionals explored views/experiences of existing National Health Service Scotland interventions, informing development of core intervention components. Phase 2: An external pilot-feasibility study was conducted in five general practitioner practices to optimise the Improving Medicines use in People with Polypharmacy in Primary care intervention. A formative mixed-methods process evaluation examined intervention implementation, alongside evaluating trial processes and collecting data to inform phase 3. Phase 3: A pragmatic, open-label two-arm parallel cluster-randomised trial was conducted in English general practice. The intervention (19 practices) comprised a structured, collaborative and patient-centred approach to medication review, supported by informatics, clinician training, performance feedback and financial incentivisation. The comparator was usual care (18 practices). Up to 50 adults receiving ≥ 5 regular medications, with ≥ 1 indicator of potentially inappropriate prescribing, were reviewed per practice over 6 months. Primary outcome was number of potentially inappropriate prescribing indicators at 26-week follow-up. Secondary outcomes included patient-reported measures and service use. Cost-effectiveness and cost-utility analyses were conducted (primary economic outcome quality-adjusted life-years). A mixed-methods process evaluation (patient surveys, patient/clinician interviews, audio-recorded observations) explored implementation. Phase 1: Intervention component design was informed by findings related to elements of the medication review, informatics and clinician training. Phase 2: Core intervention elements were successfully implemented in the pilot, although clinical delivery was hampered by disruptions due to the coronavirus disease pandemic. Phase 3: Participants were recruited between January and June 2022 (intervention N = 891, usual care N = 836), median age 73 years, 49% female, with median four long-term conditions and eight medications. No improvement in the primary outcome was observed (mean difference potentially inappropriate prescribing count - 0.007; 95% confidence interval -0.21 to 0.199). Treatment burden was slightly improved, and subgroup analysis suggested potential improvements in less complex patients. The process evaluation found general practitioners and pharmacists valued and benefitted from the model of interprofessional collaboration, which strengthened working relationships and provided an opportunity for knowledge sharing and joint decision-making that supported management of clinical uncertainty. Most patients (73.2%) reported satisfaction with the review, with satisfaction strongly associated with perceptions of shared decision-making. There was no evidence of cost-effectiveness, although the economic evaluation did not quantify the aforementioned benefits or other broader factors of potential interest to decision-makers. Key limitations include concurrent changes in usual care, potentially insensitive outcome measures and limited study-population generalisability. A complex medication optimisation intervention did not reduce potentially inappropriate prescribing in patients with polypharmacy. Findings strongly support revisiting current medication optimisation policy, with one-off structured reviews, even when enhanced with digital healthcare solutions and clinical pharmacy investment, not guaranteed to improve key clinical outcomes. Nevertheless, the positive patient and clinician findings are important: protected time for interprofessional collaborative working, plus effective integration of shared decision-making within patient-facing reviews, may facilitate improved patient care more broadly. Research should develop new patient-centred outcomes and identify higher-risk patients. This synopsis presents independent research funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme as award number 16/118/14.

Myalgic Encephalomyelitis or Chronic Fatigue Syndrome (ME/CFS) in children and young people (CYP) is disabling and relatively common (1-2% of children) [1,2], with a significant impact on patients,...

Background: Inflammatory dermatoses have a varied prevalence and appearance in diverse skin tones. The underrepresentation of people with skin of colour in medical education and clinical trials is widely acknowledged. However, there has been limited research on experiences from a patient perspective. Aim: To explore the experiences of eczema, acne, and psoriasis in adults with skin of colour in the UK. Design and setting: This was a qualitative study of 20 people in the UK with eczema, acne, and psoriasis and skin of colour, recruited using online methods. Method: Participants took part in online, one-to-one, semi-structured interviews. NVivo qualitative data analysis software was used to code and organise the data. Reflexive thematic analysis was used to generate themes using an iterative approach. Results: Participants were mostly female (65%, 13/20), Asian/Asian British ethnicity (45%, 9/20), and had eczema (55%, 11/20). We identified eight themes: delayed or missed diagnosis; preferences regarding healthcare professionals; lack of online information and social media use; misunderstanding in cultural communities; concerns about treatment and lack of research in skin of colour; complementary medicine use; experiences and impact of dyspigmentation; and challenges with structural racism. Conclusion: The themes generated highlight the unique experiences and challenges faced by UK adults with eczema, acne, and psoriasis. The findings can help guide diagnostic approaches, culturally sensitive communication, and treatment discussions for patients with skin of colour. Further research is needed in this underrepresented group.

Background: People prescribed multiple medications need regular review to optimise medication and improve health outcomes. Although the most effective method to improve inappropriate polypharmacy remains unclear, medication reviews incorporating patient-centred care and shared decision making are believed to be key to achieving optimal outcomes. Aim: To explore patients’ experiences of an intervention to deliver patient-centred polypharmacy medication review in primary care. Design and setting: A mixed-methods process evaluation was undertaken within the Improving Medicines use in People with Polypharmacy in Primary Care (IMPPP) randomised controlled trial conducted in the Bristol and West Midlands regions of England. Method: Participants receiving the intervention were invited to complete a patient experience survey. Additionally, participants were purposively sampled and invited to participate in an interview and/or audio-recording of their medication review, to explore views and experiences. Results: Survey response rate was 72.5% ( n = 556/767); 28 patients were interviewed, 27 reviews were recorded. Overall, 73.2% ( n = 407) were satisfied with their review, strongly associated with shared decision making, and 79.9% ( n = 444) expressed satisfaction with how the review was delivered (primarily pharmacist-led telephone consultations). Most audio-recordings of reviews demonstrated collaborative decision making. Patients valued reviews when they felt well-informed, prepared, and received clear follow-up. Pharmacist-led delivery was acceptable, although unfamiliarity with the reviewer and concerns about prescribing authority were perceived negatively. Conclusion: Participants were satisfied with their review, although this may be contingent on preparation and support. Findings highlight the importance of communication throughout, and how the clinician role and familiarity shape patient experience. A person-centred review approach has the potential to improve patient experience, satisfaction, and engagement.

Introduction Delirium is a common and serious condition that frequently affects patients in the intensive care unit (ICU). It is characterised by an acute disturbance in cognition, attention and awareness that develops over a short period of time and tends to fluctuate in severity. Patients with ICU delirium (ICUD) may experience confusion, disorientation, difficulty focusing and perceptual disturbances such as hallucinations or delusions. The prevalence of ICUD is high, with estimates suggesting that it can affect up to 70% of ICU patients. The development of ICUD is associated with several adverse outcomes, including prolonged ICU and hospital stays, increased healthcare costs, higher mortality rates and an increased risk of long-term cognitive impairment, including dementia. It is unclear which components should be included in a complex intervention to prevent and manage ICUD. Furthermore, we need to understand how the different components have been implemented and their impact on clinical practice. Methods and analysis The review will be reported according to the Preferred Reporting Items for Systematic reviews and Meta-Analysis Protocols (PRISMA-P) and the enhancing transparency in reporting the synthesis of qualitative research (ENTREQ) reporting recommendations. We will perform systematic searches to identify relevant interventions and implementation strategies for the prevention or management of ICUD. We will assess primary research, service evaluations and audits for the use of the Standards for QUality Improvement Reporting Excellence (SQUIRE) as a checklist for quality improvement in healthcare. We will extract both qualitative and quantitative data and assess study quality using the Critical Appraisal Skills Programme (CASP) tool. Our findings will be synthesised using a best-fit framework synthesis mapped against the Theoretical Domains Framework (TDF). Our Patient and Public Involvement (PPI) group will contribute to the development of review processes such as the research question and methodology and will help to evaluate which outcomes are most important. Ethics and dissemination No ethical approval is required for this study. The results of this systematic review of implementation strategies will be disseminated through peer-reviewed publications and conferences. They will also form part of an evidence map and logic model for factors that can improve the implementation of strategies for prevention, identification and management of ICUD. PROSPERO registration number CRD42024537313.

Design: Parallel-group randomised controlled trial. Methods: Participants: Adolescents aged 11–17 years, diagnosed with myalgic encephalomyelitis/chronic fatigue syndrome and with no local specialist treatment centre, were referred to a specialist service in South West England. Interventions: Fatigue In Teenagers on the interNET in the National Health Service is a web-based myalgic encephalomyelitis/chronic fatigue syndrome-focused cognitive–behavioural therapy programme for adolescents, supported by individualised written, asynchronous electronic consultations with a clinical psychologist/cognitive–behavioural therapy practitioner. The comparator was videocall-delivered activity management with a myalgic encephalomyelitis/chronic fatigue syndrome clinician. Both treatments were intended to last 6 months. Objectives: Estimate the effectiveness of Fatigue In Teenagers on the interNET in the National Health Service compared to Activity Management for paediatric myalgic encephalomyelitis/chronic fatigue syndrome. Estimate the effectiveness of Fatigue In Teenagers on the interNET in the National Health Service compared to Activity Management for those with mild/moderate comorbid mood disorders. From a National Health Service perspective, estimate the cost-effectiveness of Fatigue In Teenagers on the interNET in the National Health Service compared to Activity Management over a 12-month horizon. Primary Outcome: 36-item Short Form Health Survey Physical Function subscale at 6 months post randomisation. Randomisation: Web-based, using minimisation with a random component to balance allocated groups by age and gender. Blinding: While the investigators were blinded to group assignment, this was not possible for participants, parents/carers and therapists. Results: The treatment of 314 adolescents was randomly allocated, 155 to Fatigue In Teenagers on the interNET in the National Health Service. Mean age was 14 years old and 63% were female. Primary outcome: At 6 months, participants allocated to Fatigue In Teenagers on the interNET in the National Health Service were more likely to have improved physical function (mean 60.5, standard deviation 29.5, n = 127) compared to Activity Management (mean 50.3, standard deviation 26.5, n = 138). The mean difference was 8.2 (95% confidence interval 2.7 to 13.6, p = 0.003). The result was similar for participants meeting the National Institute for Health and Care Excellence 2021 diagnostic criteria. Secondary outcomes: Fatigue In Teenagers on the interNET in the National Health Service participants attended, on average, half a day more school per week at 6 months than those allocated Activity Management, and this difference was maintained at 12 months. There was no strong evidence that comorbid mood disorder impacted upon the relative effectiveness of the two interventions. Similar improvement was seen in the two groups for pain and the Clinical Global Impression scale, with a mixed picture for fatigue. Both groups continued to improve, and no clear difference in physical function remained at 12 months [difference in means 4.4 (95% confidence interval −1.7 to 10.5)]. One or more of the pre-defined measures of a worsening condition in participants during treatment, combining therapist and patient reports, were met by 39 (25%) participants in the Fatigue In Teenagers on the interNET in the National Health Service group and 42 (26%) participants in the Activity Management group. A small gain was observed for the Fatigue In Teenagers on the interNET in the National Health Service group compared to Activity Management in quality-adjusted life-years (0.002, 95% confidence interval −0.041 to 0.045). From an National Health Service perspective, the costs were £1047.51 greater in the Fatigue In Teenagers on the interNET in the National Health Service group (95% confidence interval £624.61 to £1470.41). At a base cost-effectiveness threshold of £20,000 per quality-adjusted life-year, the incremental cost-effectiveness ratio was £457,721 with incremental net benefit of −£1001 (95% confidence interval −£2041 to £38). Conclusion: At 6 months post randomisation, compared with Activity Management, Fatigue In Teenagers on the interNET in the National Health Service improved physical function and school attendance. The additional cost of Fatigue In Teenagers on the interNET in the National Health Service and limited sustained impact mean it is unlikely to be cost-effective. Trial registration: This trial is registered as ISRCTN18020851. Funding: This award was funded by the National Institute for Health and Care Research (NIHR) Health Technology Assessment programme (NIHR award ref: 14/192/109) and is published in full in Health Technology Assessment; Vol. 28, No. 70. See the NIHR Funding and Awards website for further award information.

Background: There has been significant investment in pharmacists working in UK general practice to improve the effective and safe use of medicines. However, evidence of how to optimise collaboration between GPs and pharmacists in the context of polypharmacy (multiple medication) is lacking. Aim: To explore GP and pharmacist views and experiences of in-person, interprofessional collaborative discussions (IPCDs) as part of a complex intervention to optimise medication use for patients with polypharmacy in general practice. Design and setting: A mixed-method process evaluation embedded within the Improving Medicines use in People with Polypharmacy in Primary Care (IMPPP) trial conducted in Bristol and the West Midlands, between February 2021 and September 2023. Method: Audio-recordings of IPCDs between GPs and pharmacists, along with individual semi-structured interviews to explore their reflections on these discussions, were used. All recordings were transcribed verbatim and analysed thematically. Results: A total of 14 practices took part in the process evaluation from February 2022 to September 2023; 17 IPCD meetings were audio-recorded, discussing 30 patients (range 1–6 patients per meeting). In all, six GPs and 13 pharmacists were interviewed. The IPCD was highly valued by GPs and pharmacists who described benefits, including: strengthening their working relationship; gaining in confidence to manage more complex patients; and learning from each other. It was often challenging, however, to find time for the IPCDs. Conclusion: The model of IPCD used in this study provided protected time for GPs and pharmacists to work together to deliver whole-patient care, with both professions finding this beneficial. Protected time for interprofessional liaison and collaboration, and structured interventions may facilitate improved patient care.