Factors Influencing Recovery From Pediatric Stroke Based on Discussions From a UK-Based Online Stroke Community: Qualitative Thematic Study.

BACKGROUND: The incidence of stroke in children is low, and pediatric stroke rehabilitation services are less developed than adult ones. Survivors of pediatric stroke have a long poststroke life expectancy and therefore have the potential to experience impairments from their stroke for many years. However, there are relatively few studies characterizing these impairments and what factors facilitate or counteract recovery. OBJECTIVE: This study aims to characterize the main barriers to and facilitators of recovery from pediatric stroke. A secondary aim was to explore whether these factors last into adulthood, whether they change, or if new factors impacting recovery emerge in adulthood. METHODS: We performed a qualitative thematic analysis based on posts from a population of participants from a UK-based online stroke community, active between 2004 and 2011. The analysis focused on users who talked about their experiences with pediatric stroke, as identified by a previous study. The posts were read by 3 authors, and factors influencing recovery from pediatric stroke were mapped into 4 areas: medical, physical, emotional, and social. Factors influencing recovery were divided into short-term and long-term factors. RESULTS: There were 425 posts relating to 52 survivors of pediatric stroke. Some survivors of stroke posted for themselves, while others were talked about by a third party (mostly parents; 31/35, 89% mothers). In total, 79% (41/52) of survivors of stroke were aged ≤18 years and 21% (11/52) were aged >18 years at the time of posting. Medical factors included comorbidities as a barrier to recovery. Medical interventions, such as speech and language therapy and physiotherapy, were also deemed useful. Exercise, particularly swimming, was deemed a facilitator. Among physical factors, fatigue and chronic pain could persist decades after a stroke, with both reported as a barrier to feeling fully recovered. Tiredness could worsen existing stroke-related impairments. Other long-standing impairments were memory loss, confusion, and dizziness. Among emotional factors, fear and uncertainty were short-term barriers, while positivity was a major facilitator in both short- and long-term recovery. Anxiety, grief, and behavioral problems hindered recovery. The social barriers were loneliness, exclusion, and hidden disabilities not being acknowledged by third parties. A good support network and third-party support facilitated recovery. Educational services were important in reintegrating survivors into society. Participants reported that worrying about losing financial support, such as disability allowances, and difficulties in obtaining travel insurance and driving licenses impacted recovery. CONCLUSIONS: The lived experience of survivors of pediatric stroke includes long-term hidden disabilities and barriers to rehabilitation. These are present in different settings, such as health care, schools, workplaces, and driving centers. Greater awareness of these issues by relevant professional groups may help ameliorate them.

Exploring the Types of Social Support Exchanged by Survivors of Pediatric Stroke and Their Families in an Online Peer Support Community: Qualitative Thematic Analysis.

BACKGROUND: Pediatric stroke is relatively rare and underresearched, and there is little awareness of its occurrence in wider society. There is a paucity of literature on the effectiveness of interventions to improve rehabilitation and the services available to survivors. Access to online health communities through the internet may be a means of support for patients with pediatric stroke and their families during recovery; however, little research has been done in this area. OBJECTIVE: This study aims to identify the types of social support provided by an online peer support group to survivors of pediatric stroke and their families. METHODS: This was a qualitative thematic analysis of posts from a pediatric stroke population on a UK online stroke community active between 2004 and 2011. The population was split into 2 groups based on whether stroke survivors were aged ≤18 years or aged >18 years at the time of posting. The posts were read by 2 authors who used the adapted Social Support Behavior Code to analyze the types of social support exchanged. RESULTS: A total of 52 participants who experienced a pediatric stroke were identified, who posted a total of 425 messages to the community. About 41 survivors were aged ≤18 years at the time of posting and were written about by others (31/35 were mothers), while 11 were aged >18 years and were writing about themselves. Survivors and their families joined together in discussion threads. Support was offered and received by all participants, regardless of age. Of all 425 posts, 193 (45.4%) contained at least 1 instance of social support. All 5 types of social support were identified: informational, emotional, network, esteem support, and tangible aid. Informational and emotional support were most commonly exchanged. Emotional support was offered more often than informational support among participants aged ≤18 years at the time of posting; this finding was reversed in the group aged >18 years. Network support and esteem support were less commonly exchanged. Notably, the access subcategory of network support was not exchanged with the community. Tangible aid was the least commonly offered type of support. The exchanged social support provided insight into rehabilitation interventions and the unmet needs of pediatric stroke survivors. CONCLUSIONS: We found evidence of engagement of childhood stroke survivors and their families in an online stroke community, with peer support being exchanged between both long- and short-term survivors of pediatric stroke. Engagement of long-term survivors of pediatric stroke through the online community was key, as they were able to offer informational support from lived experience. Further interventional research is needed to assess health and rehabilitation outcomes from engagement with online support groups. Research is also needed to ensure safe, nurturing online communities.

Strong and graded associations between level of asthma severity and all-cause hospital care use and costs in the UK.

BACKGROUND: Hospital admissions account for a large share of the healthcare costs incurred by people with asthma. We assessed the hospital care use and costs associated with asthma severity using the UK Biobank cohort and linked healthcare data. METHODS: Adult participants with asthma at recruitment were classified using their prescription data into mild and moderate-to-severe asthma and matched separately to asthma-free controls by age, sex, ethnicity and location. The associations of asthma, by severity, with the annual number of all-cause hospital admissions, days spent in hospital and hospital costs were estimated over a 10-year follow-up period using three specifications of negative binomial regression models that differed according to the sociodemographic and clinical characteristics adjusted for. RESULTS: Of the 25 031 participants with active asthma, 80% had mild asthma and 20% had moderate-to-severe asthma. Compared with participants with mild asthma, those with moderate-to-severe asthma were on average 2.7 years older, more likely to be current (13.7% vs 10.4%) or previous (40.2% vs 35.2%) smokers, to have a higher body mass index (BMI), and to be suffering from a variety of comorbid diseases. Following adjustments for age, sex, ethnicity and location, people with mild asthma experienced on average 36% more admissions (95% CI 28% to 40%), 43% more days in hospital (95% CI 35% to 51%) and 36% higher hospital costs (95% CI 31% to 41%) annually than asthma-free individuals, while people with moderate-to-severe asthma experienced excesses of 93% (95% CI 81% to 107%), 142% (95% CI 124% to 162%) and 98% (95% CI 88% to 108%), respectively. Further adjustments for socioeconomic deprivation, smoking status, BMI and comorbidities resulted in smaller though still highly significant positive associations, graded by severity, between asthma and hospital use and costs. CONCLUSIONS: Strong graded associations are reported between asthma severity and the extent of hospital use and costs in the UK. These findings could inform future assessments of the value of asthma management interventions.

Use of routine healthcare data in randomised implementation trials: a methodological mixed-methods systematic review.

BACKGROUND: Routine data are increasingly used in randomised controlled trials evaluating healthcare interventions. They can aid participant identification, outcome assessment, and intervention delivery. Randomised implementation trials evaluate the effect of implementation strategies on implementation outcomes. Implementation strategies, such as reminders, are used to increase the uptake of evidence-based interventions into practice, while implementation outcomes, such as adoption, are key measures of the implementation process. The use of routine data in effectiveness trials has been explored; however, there are no reviews on implementation trials. We therefore aimed to describe how routine data have been used in randomised implementation trials and the design characteristics of these trials. METHODS: We searched MEDLINE (Ovid) and Cochrane Central Register of Controlled Trials from Jan 2000 to Dec 2021 and manually searched protocols from trial registers. We included implementation trials and type II and type III hybrid effectiveness-implementation trials conducted using routine data. We extracted quantitative and qualitative data and narratively synthesised findings. RESULTS: From 4206 titles, we included 80 trials, of which 22.5% targeted implementation of evidence-based clinical guidelines. Multicomponent implementation strategies were more commonly evaluated (70.0%) than single strategies. Most trials assessed adoption as the primary outcome (65.0%). The majority of trials extracted data from electronic health records (EHRs) (62.5%), and 91.3% used routine data for outcome ascertainment. Reported reasons for using routine data were increasing efficiency, assessing outcomes, reducing research burden, improving quality of care, identifying study samples, confirming findings, and assessing representativeness. Data quality, the EHR system, research governance, and external factors such as government policy could act either as facilitators or barriers. CONCLUSIONS: Adherence to guidance on designing and reporting implementation studies, and specifically to harmonise the language used in describing implementation strategies and implementation outcomes, would aid identification of studies and data extraction. Routine healthcare data are widely used for participant identification, outcome assessment and intervention delivery. Researchers should familiarise themselves with the barriers and facilitators to using routine data, and efforts could be made to improve data quality to overcome some of the barriers. REGISTRATION: PROSPERO CRD42022292321.

Bringing the treatable traits approach to primary care asthma management.

Asthma continues to be a major cause of illness with a significant mortality, despite its increasing range of treatments. Adoption of a treatable traits approach in specialist centres has led to improvements in control of asthma and reduced exacerbations in patients with severe asthma. However, most patients with this illness, particularly those with mild-to-moderate asthma, are cared for in primary care according to guidelines that emphasise the use of pharmacotherapeutic ladders uniformly implemented across all patients. These pharmacotherapeutic ladders are more consistent with a "one-size-fits-all" approach than the treatable traits approach. This can be harmful, especially in patients whose symptoms and airway inflammation are discordant, and extra-pulmonary treatable traits are often overlooked. Primary care has extensive experience in patient-centred holistic care, and many aspects of the treatable traits approach could be rapidly implemented in primary care. Blood eosinophil counts, as a biomarker of the treatable trait of eosinophilia, are already included in routine haematology tests and could be used in primary care to guide titration of inhaled corticosteroids. Similarly, poor inhaler adherence could be further assessed and managed in primary care. However, further research is needed to guide how some treatable traits could feasibly be assessed and/or managed in primary care, for example, how to best manage patients in primary care, who are likely suffering from breathing pattern disorders and extra-pulmonary treatable traits, with frequent use of their reliever inhaler in the absence of raised T2 biomarkers. Implementation of the treatable traits approach across the disease severity spectrum will improve the quality of life of patients with asthma but will take time and research to embed across care settings.

Ethical and Information Governance Considerations for Promoting Digital Social Interventions in Primary Care.

Promoting online peer support beyond the informal sector to statutory health services requires ethical considerations and evidence-based knowledge about its impact on patients, health care professionals, and the wider health care system. Evidence on the effectiveness of digital interventions in primary care is sparse, and definitive guidance is lacking on the ethical concerns arising from the use of social media as a means for health-related interventions and research. Existing literature examining ethical issues with digital interventions in health care mainly focuses on apps, electronic health records, wearables, and telephone or video consultations, without necessarily covering digital social interventions, and does not always account for primary care settings specifically. Here we address the ethical and information governance aspects of undertaking research on the promotion of online peer support to patients by primary care clinicians, related to medical and public health ethics.

Experiences of Diagnosis, Symptoms, and Use of Reliever Inhalers in Patients With Asthma and Concurrent Inducible Laryngeal Obstruction or Breathing Pattern Disorder: Qualitative Analysis of a UK Asthma Online Community.

BACKGROUND: Breathing pattern disorders (BPDs) and inducible laryngeal obstruction (ILO) cause similar symptoms to asthma, including dyspnea and chest tightness, with an estimated prevalence of up to one-fifth of patients with asthma. Both conditions can be comorbid with asthma, and there is evidence that they are misdiagnosed and mistreated as asthma. OBJECTIVE: This study aims to explore whether the symptoms of ILO and BPD were topics of discussion in a UK asthma online health community and patient experiences of diagnosis and treatment, in particular their use of reliever inhalers. METHODS: A qualitative thematic analysis was performed with posts from an asthma community between 2018 and 2022. A list of key ILO or BPD symptoms was created from the literature. Posts were identified using the search terms "blue inhaler" and "breath" and included if describing key symptoms. Discussion threads of included posts were also analyzed. RESULTS: The search retrieved a total of 1127 relevant posts: 1069 written by 302 users and 58 posted anonymously. All participants were adults, except 2 who were parents writing about their children. Sex and age were only available for 1.66% (5/302; 3 females and 2 males) and 9.93% (30/302) of participants (27 to 73 years old), respectively. The average number of posts written by each participant was 3.54 (range 1-63). Seven participants wrote >20 posts each. Participants experiencing undiagnosed ILO or BPD symptoms, whether or not comorbid with asthma, expressed frustration with the "one-size-fits-all" approach to diagnosis, as many felt that their asthma diagnosis did not fully explain symptoms. Some suspected or were formally diagnosed with BPD or ILO, the latter reporting relief on receiving a diagnosis and appropriate management. Participants showed awareness of their inappropriate salbutamol use or overuse due to lack of effect on symptoms. BPD and ILO symptoms were frequently comorbid with asthma. The asthma online community was a valuable resource: engagement with peers not only brought comfort but also prompted action with some going back to their clinicians and reaching a diagnosis and appropriate management. CONCLUSIONS: Undiagnosed ILO and BPD symptoms and lack of effects of asthma treatment were topics of discussion in an asthma online community, caused distress and frustration in participants, and affected their relationship with health care professionals, showing that patients experiencing BPD and ILO have unmet needs. Clinicians' education on BPD and ILO diagnosis and management, as well as increased access to appropriate management options, such as respiratory physiotherapy and speech and language therapy, are warranted particularly in primary care. Qualitative evidence that engagement with the online community resulted in patients taking action going back to their clinicians and reaching a diagnosis of ILO and BPD prompts future research on online peer support from an established online health community as a self-management resource for patients.

Patient financial incentives to improve asthma management: a systematic review.

OBJECTIVES: The objectives of this systematic review are to identify studies that assess the effectiveness of patient-directed financial incentive interventions to improve asthma management behaviours, determine overall effectiveness of financial incentives, identify design characteristics of effective interventions and assess the impact on longer-term outcomes in the context of asthma. DESIGN: Systematic review with narrative synthesis. DATA SOURCES: Electronic databases (MEDLINE, Embase, Global Health, PsycINFO, CINAHL, PubMed and Web of Science) and grey literature sources (NHS Digital, CORE, ProQuest, Clinical Trials Register and EU Clinical Trials Register) were searched in November 2021 and updated March 2023. ELIGIBLITY CRITERIA: Eligible articles assessed financial incentives to improve asthma management behaviours (attendance at appointments, medication adherence, tobacco smoke/allergen exposure, inhaler technique and asthma education) for patients with asthma or parents/guardians of children with asthma. Eligible study design included randomised controlled, controlled or quasi-randomised trials and retrospective/prospective cohort, case-controlled or pilot/feasibility studies. SYNTHESIS: A narrative synthesis was conducted; eligible studies were grouped by asthma management behaviours and financial incentive framework domains. RESULTS: We identified 4268 articles; 8 met the inclusion criteria. The studies were from the USA (n=7) and the UK (n=1). Asthma management behaviours included attendance at appointments (n=4), reduction in smoke exposure (n=1) and medication adherence (n=3). Five studies demonstrated positive behaviour change, four of which were significant (attendance at appointments (n=3) showed significant differences between intervention and control: 73% and 49% in one study, 46.3% and 28.9% in another, and 35.7% and 18.9%, respectively; medication adherence (n=1) showed significant change from 80% during intervention to 33% post intervention). These four significant studies used 'positive gain', 'certain', 'fixed' financial incentives of smaller magnitude, given for 'all' instances of behaviour. CONCLUSION: There is some evidence that patient-directed financial incentives improve asthma management behaviours. However, in view of the wide heterogeneity in study design and measured outcomes, determining overall effectiveness was challenging. PROSPERO REGISTRATION NUMBER: CRD42021266679.

Non-randomised feasibility study testing a primary care intervention to promote engagement in an online health community for adults with troublesome asthma: protocol.

INTRODUCTION: In the UK, approximately 4.3 million adults have asthma, with one-third experiencing poor asthma control, affecting their quality of life, and increasing their healthcare use. Interventions promoting emotional/behavioural self-management can improve asthma control and reduce comorbidities and mortality. Integration of online peer support into primary care services to foster self-management is a novel strategy. We aim to co-design and evaluate an intervention for primary care clinicians to promote engagement with an asthma online health community (OHC). Our protocol describes a 'survey leading to a trial' design as part of a mixed-methods, non-randomised feasibility study to test the feasibility and acceptability of the intervention. METHODS AND ANALYSIS: Adults on the asthma registers of six London general practices (~3000 patients) will be invited to an online survey, via text messages. The survey will collect data on attitudes towards seeking online peer support, asthma control, anxiety, depression, quality of life, information on the network of people providing support with asthma and demographics. Regression analyses of the survey data will identify correlates/predictors of attitudes/receptiveness towards online peer support. Patients with troublesome asthma, who (in the survey) expressed interest in online peer support, will be invited to receive the intervention, aiming to reach a recruitment target of 50 patients. Intervention will involve a one-off, face-to-face consultation with a practice clinician to introduce online peer support, sign patients up to an established asthma OHC, and encourage OHC engagement. Outcome measures will be collected at baseline and 3 months post intervention and analysed with primary care and OHC engagement data. Recruitment, intervention uptake, retention, collection of outcomes, and OHC engagement will be assessed. Interviews with clinicians and patients will explore experiences of the intervention. ETHICS AND DISSEMINATION: Ethical approval was obtained from a National Health Service Research Ethics Committee (reference: 22/NE/0182). Written consent will be obtained before intervention receipt and interview participation. Findings will be shared via dissemination to general practices, conference presentations and peer-reviewed publications. TRIAL REGISTRATION NUMBER: NCT05829265.

Adapting domestic abuse training to remote delivery during the COVID-19 pandemic: a qualitative study of views from general practice and support services.

BACKGROUND: Identifying and responding to patients affected by domestic violence and abuse (DVA) is vital in primary care. There may have been a rise in the reporting of DVA cases during the COVID-19 pandemic and associated lockdown measures. Concurrently general practice adopted remote working that extended to training and education. IRIS (Identification and Referral to Improve Safety) is an example of an evidence-based UK healthcare training support and referral programme, focusing on DVA. IRIS transitioned to remote delivery during the pandemic. AIM: To understand the adaptations and impact of remote DVA training in IRIS-trained general practices by exploring perspectives of those delivering and receiving training. DESIGN AND SETTING: Qualitative interviews and observation of remote training of general practice teams in England were undertaken. METHOD: Semi-structured interviews were conducted with 21 participants (three practice managers, three reception and administrative staff, eight general practice clinicians, and seven specialist DVA staff), alongside observation of eight remote training sessions. Analysis was conducted using a framework approach. RESULTS: Remote DVA training in UK general practice widened access to learners. However, it may have reduced learner engagement compared with face-to-face training and may challenge safeguarding of remote learners who are domestic abuse survivors. DVA training is integral to the partnership between general practice and specialist DVA services, and reduced engagement risks weakening this partnership. CONCLUSION: The authors recommend a hybrid DVA training model for general practice, including remote information delivery alongside a structured face-to-face element. This has broader relevance for other specialist services providing training and education in primary care.

Characteristics of patients with asthma overprescribed short-acting beta-agonist (SABA) reliever inhalers stratified by blood eosinophil count in North East London: a cross-sectional observational study.

BACKGROUND: Overprescription of short-acting beta-agonist (SABA) inhalers and blood eosinophil count have strong associations with exacerbation risk in asthma. However, in the authors' recent publication only a minority of patients overprescribed SABA (≥6 inhalers in 12 months) were eosinophilic (≥0.3 x 109 cells/l). AIM: To compare the characteristics of eosinophilic and non-eosinophilic patients with asthma overprescribed SABA inhalers, and identify latent classes using clinical variables available in primary care. DESIGN & SETTING: Cross-sectional analysis of patients with asthma in North East London, England, using primary care electronic health record data. METHOD: Unadjusted and adjusted multi-variate regression models and latent class analysis. RESULTS: Eosinophilia was significantly less likely in female patients (P = 0.004), those with multiple mental health comorbidities (P<0.001), and those with SABA on repeat prescription (P<0.001). Latent class analysis identified the following three classes of patients overprescribed SABA: class 1, which represents classical uncontrolled asthma (oral steroids required for exacerbations, step 2-3 asthma medications, high probability of being eosinophilic); class 2, which represents mild asthma (low exacerbation frequency, low asthma medication step, low probability of being eosinophilic); and class 3, which represents difficult asthma (high exacerbation frequency despite high-strength preventer inhalers, low probability of being eosinophilic). The mild asthma class was the largest. CONCLUSION: Many patients being overprescribed SABA were non-eosinophilic with a low exacerbation frequency, suggesting disproportionately high SABA prescription compared with other asthma control markers. Potential reasons for high SABA prescription in these patients included repeat prescription (being dispensed but not taken) and use of SABA for non-asthma breathlessness (for example, breathing pattern disorders with anxiety). Further research is needed into management of SABA overuse in patients without other markers of uncontrolled asthma.

Patient and public involvement in research: the need for budgeting PPI staff costs in funding applications.

BACKGROUND: Patient and Public Involvement (PPI) groups are becoming more established as collaborators with academic researchers and institutions to ensure that research is important and relevant to end users, and to identify areas that might have ethical considerations, as well as to advise on solutions. The National Institute for Health and Care Research UK Standards for Public Involvement in Research embody best practice for PPI, including support and learning opportunities that build confidence and skills for members of the public to play an invaluable and mutually productive role in research. However, the pivotal role of research and professional services (management and administrative) staff within academic institutions for sustaining and making this involvement successful is often overlooked. MAIN BODY: It takes significant effort to develop and sustain effective PPI in research. The six UK Standards for Public Involvement highlight the need for consistent, inclusive, well-governed and mutually respectful working relationships to sustain effective PPI contributions in health research. Productivity across a team of lay and academic members requires organisation and experience of implementing these standards by a dedicated PPI team, yet advice on PPI finances is usually focused on costs for patient panel members, and budgets in funding applications rarely consider the wider PPI team behind this involvement. As an exemplar, we reflect on how the Asthma UK Centre for Applied Research (AUKCAR) has developed a dedicated PPI Platform, with guidance for how PPI should be embedded throughout the research lifecycle, and detailed information to support the costing of PPI in funding applications. AUKCAR's work with established researchers, as well as Early Career Researchers and PhD students, is at the heart of a campaign to raise awareness of the importance of PPI in effective research planning. CONCLUSION: Focusing attention on the staff behind best practice involvement in health research may stimulate a much-needed discussion to ensure flourishing PPI capacity, with significant patient and public benefit. With adaptation, the PPI expertise within AUKCAR can be translated more widely.

Patient and Public Involvement (PPI) is important for high-quality research. It makes research more relevant to patients, and makes the results more useful for the health service. To make patient involvement effective, we need skilled staff with experience of involving lay members in research, as well as engaging researchers in PPI activities. There is little guidance about staff time needed to recruit and support lay members and researchers properly. This means that we still do not understand the true cost of including patients and the public in research, and we often under cost this in funding applications. As an example, we reflect on how the Asthma UK Centre for Applied Research (AUKCAR) has organised staff to support for its patient involvement. We give some thoughts on how to cost PPI staff time in funding applications. By focusing attention on the team behind the lay volunteers, we hope to encourage a much-needed discussion about the support involved, and deliver more patient benefits. The AUKCAR experience can be adapted to other research topics and contexts.

General practice wide adaptations to support patients affected by DVA during the COVID-19 pandemic: a rapid qualitative study.

BACKGROUND: Reporting of domestic violence and abuse (DVA) increased globally during the pandemic. General Practice has a central role in identifying and supporting those affected by DVA. Pandemic associated changes in UK primary care included remote initial contacts with primary care and predominantly remote consulting. This paper explores general practice's adaptation to DVA care during the COVID-19 pandemic. METHODS: Remote semi-structured interviews were conducted by telephone with staff from six localities in England and Wales where the Identification and Referral to Improve Safety (IRIS) primary care DVA programme is commissioned.  We conducted interviews between April 2021 and February 2022 with three practice managers, three reception and administrative staff, eight general practice clinicians and seven specialist DVA staff. Patient and public involvement and engagement (PPI&E) advisers with lived experience of DVA guided the project. Together we developed recommendations for primary care teams based on our findings. RESULTS: We present our findings within four themes, representing primary care adaptations in delivering DVA care: 1. Making general practice accessible for DVA care: staff adapted telephone triaging processes for appointments and promoted availability of DVA support online. 2. General practice team-working to identify DVA: practices developed new approaches of collaboration, including whole team adaptations to information processing and communication 3. Adapting to remote consultations about DVA: teams were required to adapt to challenges including concerns about safety, privacy, and developing trust remotely. 4. Experiences of onward referrals for specialist DVA support: support from specialist services was effective and largely unchanged during the pandemic. CONCLUSIONS: Disruption caused by pandemic restrictions revealed how team dynamics and interactions before, during and after clinical consultations contribute to identifying and supporting patients experiencing DVA. Remote assessment complicates access to and delivery of DVA care. This has implications for all primary and secondary care settings, within the NHS and internationally, which are vital to consider in both practice and policy.

Reducing short-acting beta-agonist overprescribing in asthma: lessons from a quality-improvement prescribing project in East London.

BACKGROUND: Excess prescription and use of short-acting beta-agonist (SABA) inhalers is associated with poor asthma control and increased risk of hospital admission. AIM: To quantify the prevalence and identify the predictors of SABA overprescribing. DESIGN AND SETTING: A cross-sectional study using anonymised clinical and prescribing data from the primary care records in three contiguous East London boroughs. METHOD: Primary care medical record data for patients aged 5-80 years, with 'active' asthma were extracted in February 2020. Explanatory variables included demography, asthma management, comorbidities, and prescriptions for asthma medications. RESULTS: In the study population of 30 694 people with asthma, >25% (1995/7980), were prescribed ≥6 SABA inhalers in the previous year. A 10-fold variation between practices (<6% to 60%) was observed in the proportion of patients on ≥6 SABA inhalers/year. By converting both SABAs and inhaled corticosteroids (ICSs) to standard units the accuracy of comparisons was improved across different preparations. In total, >25% of those taking ≥6 SABAs/year were underusing ICSs, this rose to >80% (18 170/22 713), for those prescribed <6 SABAs/year. Prescription modality was a strong predictor of SABA overprescribing, with repeat dispensing strongly linked to SABA overprescribing (odds ratio 6.52, 95% confidence interval = 4.64 to 9.41). Increasing severity of asthma and multimorbidity were also independent predictors of SABA overprescribing. CONCLUSION: In this multi-ethnic population a fifth of practices demonstrate an overprescribing rate of <20% a year. Based on previous data, supporting practices to enable the SABA ≥12 group to reduce to 4-12 a year could potentially save up to 70% of asthma admissions a year within that group.

Digital interventions to improve adherence to maintenance medication in asthma.

BACKGROUND: Asthma is the most common chronic lung condition worldwide, affecting 334 million adults and children globally. Despite the availability of effective treatment, such as inhaled corticosteroids (ICS), adherence to maintenance medication remains suboptimal. Poor ICS adherence leads to increased asthma symptoms, exacerbations, hospitalisations, and healthcare utilisation. Importantly, suboptimal use of asthma medication is a key contributor to asthma deaths. The impact of digital interventions on adherence and asthma outcomes is unknown. OBJECTIVES: To determine the effectiveness of digital interventions for improving adherence to maintenance treatments in asthma. SEARCH METHODS: We identified trials from the Cochrane Airways Trials Register, which contains studies identified through multiple electronic searches and handsearches of other sources. We also searched trial registries and reference lists of primary studies. We conducted the most recent searches on 1 June 2020, with no restrictions on language of publication. A further search was run in October 2021, but studies were not fully incorporated. SELECTION CRITERIA: We included randomised controlled trials (RCTs) including cluster- and quasi-randomised trials of any duration in any setting, comparing a digital adherence intervention with a non-digital adherence intervention or usual care. We included adults and children with a clinical diagnosis of asthma, receiving maintenance treatment. DATA COLLECTION AND ANALYSIS: We used standard methodological procedures for data collection. We used GRADE to assess quantitative outcomes where data were available. MAIN RESULTS: We included 40 parallel randomised controlled trials (RCTs) involving adults and children with asthma (n = 15,207), of which eight are ongoing studies. Of the included studies, 30 contributed data to at least one meta-analysis. The total number of participants ranged from 18 to 8517 (median 339). Intervention length ranged from two to 104 weeks. Most studies (n = 29) reported adherence to maintenance medication as their primary outcome; other outcomes such as asthma control and quality of life were also commonly reported. Studies had low or unclear risk of selection bias but high risk of performance and detection biases due to inability to blind the participants, personnel, or outcome assessors. A quarter of the studies had high risk of attrition bias and selective outcome reporting. We examined the effect of digital interventions using meta-analysis for the following outcomes: adherence (16 studies); asthma control (16 studies); asthma exacerbations (six studies); unscheduled healthcare utilisation (four studies); lung function (seven studies); and quality of life (10 studies). Pooled results showed that patients receiving digital interventions may have increased adherence (mean difference of 14.66 percentage points, 95% confidence interval (CI) 7.74 to 21.57; low-certainty evidence); this is likely to be clinically significant in those with poor baseline medication adherence. Subgroup analysis by type of intervention was significant (P = 0.001), with better adherence shown with electronic monitoring devices (EMDs) (23 percentage points over control, 95% CI 10.84 to 34.16; seven studies), and with short message services (SMS) (12 percentage points over control, 95% CI 6.22 to 18.03; four studies). No significant subgroup differences were seen for interventions having an in-person component versus fully digital interventions, adherence feedback, one or multiple digital components to the intervention, or participant age. Digital interventions were likely to improve asthma control (standardised mean difference (SMD) 0.31 higher, 95% CI 0.17 to 0.44; moderate-certainty evidence) - a small but likely clinically significant effect. They may reduce asthma exacerbations (risk ratio 0.53, 95% CI 0.32 to 0.91; low-certainty evidence). Digital interventions may result in a slight change in unscheduled healthcare utilisation, although some studies reported no or a worsened effect. School or work absence data could not be included for meta-analysis due to the heterogeneity in reporting and the low number of studies. They may result in little or no difference in lung function (forced expiratory volume in one second (FEV1)): there was an improvement of 3.58% predicted FEV1, 95% CI 1.00% to 6.17%; moderate-certainty evidence); however, this is unlikely to be clinically significant as the FEV1 change is below 12%. Digital interventions likely increase quality of life (SMD 0.26 higher, 95% CI 0.07 to 0.45; moderate-certainty evidence); however, this is a small effect that may not be clinically significant. Acceptability data showed positive attitudes towards digital interventions. There were no data on cost-effectiveness or adverse events. Our confidence in the evidence was reduced by risk of bias and inconsistency. AUTHORS' CONCLUSIONS: Overall, digital interventions may result in a large increase in adherence (low-certainty evidence). There is moderate-certainty evidence that digital adherence interventions likely improve asthma control to a degree that is clinically significant, and likely increase quality of life, but there is little or no improvement in lung function. The review found low-certainty evidence that digital interventions may reduce asthma exacerbations. Subgroup analyses show that EMDs may improve adherence by 23% and SMS interventions by 12%, and interventions with an in-person element and adherence feedback may have greater benefits for asthma control and adherence, respectively. Future studies should include percentage adherence as a routine outcome measure to enable comparison between studies and meta-analysis, and use validated questionnaires to assess adherence and outcomes.

Experiences and behaviours of patients with asthma requesting prescriptions from primary care during medication shortages linked to the COVID-19 lockdown: insights from a qualitative analysis of a UK asthma online community.

BACKGROUND: Inhaler shortages were reported in the UK following declaration of the COVID-19 pandemic, prompting advice against stockpiling. AIM: To understand experiences and behaviours of patients with asthma requesting prescriptions from primary care during asthma medication shortages. DESIGN & SETTING: UK asthma online community, between March and December 2020. METHOD: Thematic analysis of posts identified using search terms 'shortage', 'out of stock', 'prescribe', and 'prescription'. RESULTS: Sixty-seven participants were identified (48 adults, two children, 17 unstated age). Factors leading to increased requests included the following: stockpiling; early ordering; realising inhalers were out of date; and doctors prescribing multiple medication items. Patients' anxieties that could lead to stockpiling included the following: fear of asthma attacks leading to admission and acquiring COVID-19 in hospital; lack of dose counters on some inhalers; and believing a lower amount of drug is delivered in the last actuations. Strategies adopted in relation to shortages or changes in treatment owing to out-of-stock medications included the following: starting stockpiling; ordering prescriptions early; contacting medical professionals for advice or alternative prescriptions; getting 'emergency prescriptions'; ordering online or privately; seeking medications in different pharmacies; contacting drug manufacturers; and keeping track of number of doses left in canisters. No evidence was found of anxiety-triggered asthma symptoms that required medications due to fear of COVID-19. Participants seemed to disregard advice against stockpiling. CONCLUSION: Better preparation is a key lesson from the COVID-19 pandemic. Clinicians, the pharmaceutical industry, and policymakers should use insights from this work to plan how to better manage medication shortages in future emergency situations.

Understanding Online and Offline Social Networks in Illness Management of Older Patients With Asthma and Chronic Obstructive Pulmonary Disease: Mixed Methods Study Using Quantitative Social Network Assessment and Qualitative Analysis.

BACKGROUND: Individuals' social networks and social support are fundamental determinants of self-management and self-efficacy. In chronic respiratory conditions, social support can be promoted and optimized to facilitate the self-management of breathlessness. OBJECTIVE: This study aimed to identify how online and offline social networks play a role in the health management of older patients with chronic respiratory conditions, explore the role of support from online peers in patients' self-management, and understand the barriers to and potential benefits of digital social interventions. METHODS: We recruited participants from a hospital-run singing group to a workshop in London, the United Kingdom, and adapted PERSNET, a quantitative social network assessment tool. The second workshop was replaced by telephone interviews because of the COVID-19 lockdown. The transcripts were analyzed using thematic analysis. RESULTS: A total of 7 participants (2/7, 29%, men and 5/7, 71%, women), with an age range of 64 to 81 years, produced network maps that comprised between 5 and 10 individuals, including family members, health care professionals, colleagues, activity groups, offline and online friends, and peers. The visual maps facilitated reflections and enhanced participants' understanding of the role of offline and online social networks in the management of chronic respiratory conditions. It also highlighted the work undertaken by the networks themselves in the self-management support. Participants with small, close-knit networks received physical, health, and emotional support, whereas those with more diverse and large networks benefited from accessing alternative and complementary sources of information. Participants in the latter type of network tended to communicate more openly and comfortably about their illness, shared the impact of their illness on their day-to-day life, and demonstrated distinct traits in terms of identity and perception of chronic disease. Participants described the potential benefits of expanding their networks to include online peers as sources of novel information, motivation, and access to supportive environments. Lack of technological skills, fear of being scammed, or preference for keeping illness-related problems for themselves and immediate family were reported by some as barriers to engaging with online peer support. CONCLUSIONS: In this small-scale study, the social network assessment tool proved feasible and acceptable. These data show the value of using a social network tool as a research tool that can help assess and understand network structure and engagement in the self-management support and could be developed into an intervention to support self-management. Patients' preferences to share illness experiences with their online peers, as well as the contexts in which this can be acceptable, should be considered when developing and offering digital social interventions. Future studies can explore the evolution of the social networks of older people with chronic illnesses to understand whether their willingness to engage with online peers can change over time.

Experiences of exercise in patients with asthma: a qualitative analysis of discussions in a UK asthma online community.

BACKGROUND: Engagement with exercise in adults with asthma is suboptimal. Limited information is available regarding factors affecting engagement with exercise. AIM: To explore experiences of exercise and linked unmet needs in adults with asthma. DESIGN & SETTING: Qualitative thematic analysis of posts in a UK asthma online community, written between 2015 and 2020. METHOD: Posts were identified using keywords searches. Posts in the 'Exercise' topic section were additionally included. Thematic analysis of posts was undertaken. RESULTS: A total of 143 relevant posts were analysed. Ninety-two participants were identified through posts (11 male, 33 female, 48 sex not stated, aged 26-73 years). Emerging themes included the following: fear of experiencing asthma symptoms during exercise; lack of information about how to deal with symptoms; external barriers; emotional response; and involvement of healthcare providers. Environmental factors, concomitant life stressors, distrust of healthcare professionals, and embarrassment about displaying asthma symptoms during exercise were barriers to engagement. Facilitators included experiencing positive health outcomes following exercise and positive discussions regarding exercise with healthcare professionals. Strategies participants developed to enable exercise were warming up, increasing reliever and preventer inhalers when exercising, and finding exercises the individual felt were enjoyable. CONCLUSION: Future interventions to address fears of exercise-induced physical symptoms, and clear instructions on the use of inhalers when exercising are needed. Exploring patients' attitudes to exercise in clinical consultations, especially in primary care, may be beneficial.

Impact of the first national COVID-19 lockdown on referral of women experiencing domestic violence and abuse in England and Wales.

BACKGROUND: The lockdown periods to curb COVID-19 transmission have made it harder for survivors of domestic violence and abuse (DVA) to disclose abuse and access support services. Our study describes the impact of the first COVID-19 wave and the associated national lockdown in England and Wales on the referrals from general practice to the Identification and Referral to Improve Safety (IRIS) DVA programme. We compare this to the change in referrals in the same months in the previous year, during the school holidays in the 3 years preceding the pandemic and the period just after the first COVID-19 wave. School holiday periods were chosen as a comparator, since families, including the perpetrator, are together, affecting access to services. METHODS: We used anonymised data on daily referrals received by the IRIS DVA service in 33 areas from general practices over the period April 2017-September 2020. Interrupted-time series and non-linear regression were used to quantify the impact of the first national lockdown in March-June 2020 comparing analogous months the year before, and the impact of school holidays (01/04/2017-30/09/2020) on number of referrals, reporting Incidence Rate Ratio (IRR), 95% confidence intervals and p-values. RESULTS: The first national lockdown in 2020 led to reduced number of referrals to DVA services (27%, 95%CI = (21,34%)) compared to the period before and after, and 19% fewer referrals compared to the same period in the year before. A reduction in the number of referrals was also evident during the school holidays with the highest reduction in referrals during the winter 2019 pre-pandemic school holiday (44%, 95%CI = (32,54%)) followed by the effect from the summer of 2020 school holidays (20%, 95%CI = (10,30%)). There was also a smaller reduction (13-15%) in referrals during the longer summer holidays 2017-2019; and some reduction (5-16%) during the shorter spring holidays 2017-2019. CONCLUSIONS: We show that the COVID-19 lockdown in 2020 led to decline in referrals to DVA services. Our findings suggest an association between decline in referrals to DVA services for women experiencing DVA and prolonged periods of systemic closure proxied here by both the first COVID-19 national lockdown or school holidays. This highlights the need for future planning to provide adequate access and support for people experiencing DVA during future national lockdowns and during the school holidays.

Electronic reminders and rewards to improve adherence to inhaled asthma treatment in adolescents: a non-randomised feasibility study in tertiary care.

OBJECTIVE: To test the feasibility and acceptability of a short-term reminder and incentives intervention in adolescents with low adherence to asthma medications. METHODS: Mixed-methods feasibility study in a tertiary care clinic. Adolescents recruited to a 24-week programme with three 8-weekly visits, receiving electronic reminders to prompt inhaled corticosteroid (ICS) inhalation through a mobile app coupled with electronic monitoring devices (EMD). From the second visit, monetary incentives based on adherence of ICS inhalation: £1 per dose, maximum £2 /day, up to £112/study, collected as gift cards at the third visit. End of study interviews and questionnaires assessing perceptions of asthma and ICS, analysed using the Perceptions and Practicalities Framework. PARTICIPANTS: Adolescents (11-18 years) with documented low ICS adherence (<80% by EMD), and poor asthma control at the first clinic visit. RESULTS: 10 out of 12 adolescents approached were recruited (7 males, 3 females, 12-16 years). Eight participants provided adherence measures up to the fourth visits and received rewards. Mean study duration was 281 days, with 7/10 participants unable to attend their fourth visit due to COVID-19 lockdown. Only 3/10 participants managed to pair the app/EMD up to the fourth visit, which was associated with improved ICS adherence (from 0.51, SD 0.07 to 0.86, SD 0.05). Adherence did not change in adolescents unable to pair the app/EMD. The intervention was acceptable to participants and parents/guardians. Exit interviews showed that participants welcomed reminders and incentives, though expressed frustration with app/EMD technological difficulties. Participants stated the intervention helped through reminding ICS doses, promoting self-monitoring and increasing motivation to take inhalers. CONCLUSIONS: An intervention using electronic reminders and incentives through an app coupled with an EMD was feasible and acceptable to adolescents with asthma. A pilot randomised controlled trial is warranted to better estimate the effect size on adherence, with improved technical support for the EMD.