Opinions on the use of technology to improve tablet taking in >65-year-old patients on cardiovascular medications.

Objective This study was performed to evaluate the perceptions of the use of technology to improve cardiovascular medicine taking among patients aged >65 years. Methods This qualitative study used focus groups with people aged >65 years taking cardiovascular medications from two East London community centres. Thematic analysis was informed by the Perceptions and Practicalities Approach framework. Results Participants welcomed technologies they considered familiar, accessible, and easy to use. They valued the opportunity to receive alerts to help with forgetting and monitoring their treatment. More advanced technologies such as ingestible sensor systems were considered helpful for elderly people with significant cognitive impairments still living in the community because of improved monitoring by caregivers and clinicians and prolonging independence. Although generally adapting to the increase in technology in everyday life, participants raised a number of concerns that included potential reduction in face-to-face communication, data security, becoming dependent on technology, and worrying about the consequences of technological failure. Conclusions Participants raised a number of concerns and practical barriers that would need to be addressed for technologies to be accepted and adopted in this patient group

Stroke survivors and their families receive information and support on an individual basis from an online forum: descriptive analysis of a population of 2348 patients and qualitative study of a sample of participants.

OBJECTIVE: To describe the characteristics of participants of an online stroke forum, their reasons for posting in the forum and whether responses addressed users' needs. METHODS: Descriptive analysis of the population of 2004-2011 archives of Talkstroke, the online forum of the Stroke Association, and comparison with patients admitted to hospital with stroke (Sentinel Stroke National Audit Programme, SSNAP). Thematic analysis of posts from a sample of 59 participants representative of age at stroke and sex. SETTINGS: UK. MAIN OUTCOME MEASURES: Characteristics of participants: age, sex, survivor versus patient by third party, side of stroke (R, L), social class; (from the sample of 59 participants): level of disability, stroke type, classification of users' intents for writing a post in the forum, quantification of needs addressed by the forum, topics of discussion. PARTICIPANTS: 2348 participants (957 stroke survivors, 1391 patients with stroke talked about by third party). RESULTS: Patients of both sexes and from a wide range of ages at stroke (0 to 95 years) and degrees of disability were represented in the forum, although younger than the UK stroke population (mean age 52 years vs 77 years in SSNAP). Analysis of 841 posts showed that the main users' intents for writing in the forum were requests/offers of information and support (58%) and sharing own experiences of stroke (35%). Most information needs were around stroke-related physical impairments, understanding the cause of stroke and the potential for recovery. Up to 95% of the users' intents were met by the replies received. CONCLUSIONS: Patients' needs expressed in the online forum confirm and widen the evidence from traditional research studies, showing that such forums are a potential resource for studying needs in this population. The forum provided an opportunity for patients and families to give and receive advice and social support.This study was funded by a NIHR Academic Clinical Lectureship to Anna De Simoni. The Evelyn Trust funded Chantal Balasooriya-Smeekens’s work.This is the final published version. It first appeared at http://bmjopen.bmj.com/content/6/4/e010501.abstract

Barriers and facilitators to staying in work after stroke: insight from an online forum.

OBJECTIVE: To explore barriers and facilitators to staying in work following stroke. DESIGN: Qualitative analysis of posts regarding staying in work following stroke using the archives of an online forum for stroke survivors. PARTICIPANTS: 60 stroke survivors (29 male, 23 female, 8 not stated; mean age at stroke 44 years) who have returned to work, identified using terms 'return to work' and 'back at work'. SETTING: Posts from UK stroke survivors and family members on Talkstroke, the forum of the Stroke Association, between 2004 and 2011. RESULTS: Stroke and transient ischaemic attack (TIA) survivors reported residual impairments that for many had impact on work. Most impairments were 'invisible', including fatigue, problems with concentration, memory and personality changes. Participants described positive (eg, back at work being better than expected) and negative work experiences, including being at risk of losing the job because of stroke-related impairments. Barriers to successfully staying in work included lack of understanding of stroke--in particular invisible impairments--of survivors, employers and general practitioners (GPs), and lack of support in terms of formal adjustments, and 'feeling supported'. Stroke survivors described how they developed their own coping strategies, and how workplace and employer helped them to stay in work. CONCLUSIONS: Despite having been able to return to work after a stroke, people may still experience difficulties in staying in work and risking losing their job. There is a need to improve awareness, in particular of invisible stroke-related impairments, among stroke survivors, work personnel and clinicians. This might be achieved through improved assessments of residual impairments in the workplace and in general practice. Future studies should investigate the effect of unrecognised fatigue and invisible impairments on staying in work following stroke, and explore the potential role for primary care in supporting stroke survivors who have returned to employment.This study was funded by the Evelyn Trust. Anna De Simoni is funded by a NIHR Academic Clinical Lectureship. Andrew Bateman was supported by the National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care East of England at Cambridgeshire and Peterborough NHS Foundation Trust. The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health.This is the final published version. It first appeared at http://bmjopen.bmj.com/content/6/4/e009974.abstract

How primary care can help stroke survivors with returning to work: focus groups with stakeholders from a UK community

Background Evidence about how primary care can best enable survivors of transient ischaemic attack (TIA)/stroke return to work is limited. Aim This study explored the role of primary care in supporting survivors of transient ischaemic attack (TIA)/stroke return to work with stakeholders from a local UK community. Design A qualitative study using framework analysis. Method Four focus groups were carried out in Cambridgeshire, UK, between September and November 2015. The 18 participants included survivors of TIA/stroke, carers, an employer representative, GPs, occupational therapists (OTs), and clinical commissioners. Results There was a mismatch between patient and carer needs and what is provided by primary care. This included: lack of GP awareness of invisible impairments; uncertainty how primary care could help in time-limited consultations; and complexity of return-to-work issues. Primary care physicians were not aware of relevant services they could refer patients to, such as OT support. In addition, there was an overall lack of coordination between different stakeholders in the return-to-work process. Linking with other services was considered important but challenging because of ongoing changes in service structure and the commissioning model. Suggestions for improvement include: a central contact in primary care for signposting to available services; a rehabilitation assessment integrated with the electronic record; and a patient-held shared-care plan at discharge from stroke wards. Conclusion Improving the role for primary care in helping survivors of TIA/stroke return to work is challenging. However, primary care could play a central role in initiating/coordinating vocational rehabilitation. Through focus group discussions with stakeholders from a local community, patients, carers, and clinical commissioners were able to put forward concrete proposals to address the barriers identified.This study was funded by the Evelyn Trust (grant reference14/33). Anna De Simoni was funded by a NIHR Academic Clinical Lectureship. Andrew Bateman was supported by the National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care East of England at Cambridgeshire and Peterborough NHS Foundation Trust. Jonathan Mant is an NIHR Senior Investigator. The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Healt

How is poststroke fatigue understood by stroke survivors and carers? A thematic analysis of an online discussion forum.

OBJECTIVE: To understand poststroke fatigue from the perspective of stroke survivors and caregivers expressed in an online discussion forum. DESIGN: The search terms 'tiredness', 'fatigue', 'tired', 'weary' and 'weariness' were used to identify relevant posts. Thematic analysis performed by two independent researchers who coded all forum posts and identified pertinent themes. Posts were coded in relation to two research questions: (1) how is poststroke fatigue described? and (2) what coping strategies are suggested to target poststroke fatigue? Each theme was then summarised by a lead quotation in forum users' own words. SETTING: UK-based web forum hosted by Stroke Association, TalkStroke. Archives from 2004 to 2011 were accessed. PARTICIPANTS: 65 stroke survivors and caregivers (mean age 54 years, 61% female) contributed to 89 relevant posts that included a relevant search term. This included 38 stroke survivors, 23 individuals with family or carer role and 4 others unidentified. RESULTS: Six themes were generated: (1) medicalisation of poststroke fatigue: 'a classic poststroke symptom', (2) a tiredness unique to stroke: 'a legacy of stroke', (3) normalisation and acceptance of poststroke fatigue: 'part and parcel of stroke', (4) fighting the fatigue: 'an unwelcome guest', (5) survivors' and caregivers' biological explanations: 'the brain healing' and (6) coping mechanisms: 'pace yourself'. Forum users also repeatedly commented that poststroke fatigue was 'not understood by the profession'. CONCLUSION: This is the first study to employ data from an online forum to characterise poststroke fatigue. Our data are considered naturalistic owing to the absence of a researcher guiding the discussion and thus generates useful insights for healthcare professionals. Findings suggest a requirement for consistent understanding and explanation to be provided by healthcare professionals. The beliefs outlined here highlight the gap between clinical and community knowledge. Further research to translate understanding of patient and carer perspective into improved management of poststroke fatigue is required.This study was funded by the Malati Kanbur Studentship fund kindly donated by Ravi Kanbur and Margaret Grieco to Lucy Cavendish College, constituent college of the University of Cambridge. Jonathan Mant is an NIHR Senior Investigator. Views expressed in this written publication are those of the authors and not necessarily those of the funders

Barriers and facilitators to staying in work after stroke: insight from an online forum

OBJECTIVE: To explore barriers and facilitators to staying in work following stroke. DESIGN: Qualitative analysis of posts regarding staying in work following stroke using the archives of an online forum for stroke survivors. PARTICIPANTS: 60 stroke survivors (29 male, 23 female, 8 not stated; mean age at stroke 44 years) who have returned to work, identified using terms 'return to work' and 'back at work'. SETTING: Posts from UK stroke survivors and family members on Talkstroke, the forum of the Stroke Association, between 2004 and 2011. RESULTS: Stroke and transient ischaemic attack (TIA) survivors reported residual impairments that for many had impact on work. Most impairments were 'invisible', including fatigue, problems with concentration, memory and personality changes. Participants described positive (eg, back at work being better than expected) and negative work experiences, including being at risk of losing the job because of stroke-related impairments. Barriers to successfully staying in work included lack of understanding of stroke--in particular invisible impairments--of survivors, employers and general practitioners (GPs), and lack of support in terms of formal adjustments, and 'feeling supported'. Stroke survivors described how they developed their own coping strategies, and how workplace and employer helped them to stay in work. CONCLUSIONS: Despite having been able to return to work after a stroke, people may still experience difficulties in staying in work and risking losing their job. There is a need to improve awareness, in particular of invisible stroke-related impairments, among stroke survivors, work personnel and clinicians. This might be achieved through improved assessments of residual impairments in the workplace and in general practice. Future studies should investigate the effect of unrecognised fatigue and invisible impairments on staying in work following stroke, and explore the potential role for primary care in supporting stroke survivors who have returned to employment.Grant from Evelyn TrustThis is the final published version. It first appeared at http://bmjopen.bmj.com/content/6/4/e009974.abstract

Development of a conceptual framework for defining trial efficiency

BackgroundGlobally, there is a growing focus on efficient trials, yet numerous interpretations have emerged, suggesting a significant heterogeneity in understanding “efficiency” within the trial context. Therefore in this study, we aimed to dissect the multifaceted nature of trial efficiency by establishing a comprehensive conceptual framework for its definition.ObjectivesTo collate diverse perspectives regarding trial efficiency and to achieve consensus on a conceptual framework for defining trial efficiency.MethodsFrom July 2022 to July 2023, we undertook a literature review to identify various terms that have been used to define trial efficiency. We then conducted a modified e-Delphi study, comprising an exploratory open round and a subsequent scoring round to refine and validate the identified items. We recruited a wide range of experts in the global trial community including trialists, funders, sponsors, journal editors and members of the public. Consensus was defined as items rated “without disagreement”, measured by the inter-percentile range adjusted for symmetry through the UCLA/RAND approach.Results Seventy-eight studies were identified from a literature review, from which we extracted nine terms related to trial efficiency. We then used review findings as exemplars in the Delphi open round. Forty-nine international experts were recruited to the e-Delphi panel. Open round responses resulted in the refinement of the initial nine terms, which were consequently included in the scoring round. We obtained consensus on all nine items: 1) four constructs that collectively define trial efficiency containing scientific efficiency, operational efficiency, statistical efficiency and economic efficiency; and 2) five essential building blocks for efficient trial comprising trial design, trial process, infrastructure, superstructure, and stakeholders.ConclusionsThis is the first attempt to dissect the concept of trial efficiency into theoretical constructs. Having an agreed definition will allow better trial implementation and facilitate effective communication and decision-making across stakeholders. We also identified essential building blocks that are the cornerstones of an efficient trial. In this pursuit of understanding, we are not only unravelling the complexities of trial efficiency but also laying the groundwork for evaluating the efficiency of an individual trial or a trial system in the future.<br/

Online stroke forum as source of data for qualitative research: insights from a comparison with patients' interviews.

OBJECTIVE: To determine the appropriateness of an online forum compared with face-to-face interviews as a source of data for qualitative research on adherence to secondary prevention medications after stroke. DESIGN: A comparison of attributes of two data sources, interviews and a forum, using realistic evaluation; a comparison of themes around adherence according to the Perceptions and Practicalities Approach (PAPA) framework. SETTING: Interviews were conducted in UK GP practices in 2013 and 2014; online posts were written by UK stroke survivors and family members taking part in the online forum of the Stroke Association between 2004 and 2011. PARTICIPANTS: 42 interview participants: 28 stroke survivors (age range 61-92 years) and 14 caregivers (85% spouses). 84 online forum participants: 49 stroke survivors (age range 32-72 years) and 33 caregivers (60% sons/daughters). RESULTS: 10 attributes were identified within the two data sources and categorised under three domains (context, mechanisms and outcomes). Participants' characteristics of forum users were often missing. Most forum participants had experienced a stroke within the previous 12 months, while interviewees had done so 1-5 years previously.All interview themes could be matched with corresponding themes from the forum. The forum yielded three additional themes: influence of bad press on taking statins, criticisms of clinicians' prescribing practices and caregiver burden in assisting with medications and being advocates for survivors with healthcare professionals. CONCLUSIONS: An online forum is an appropriate source of data for qualitative research on patients' and caregivers' issues with adherence to secondary prevention stroke medications and may offer additional insights compared with interviews, which can be attributed to differences in the approach to data collection

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

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