Factors influencing decisions people with motor neuron disease make about gastrostomy placement and ventilation: A qualitative evidence synthesis.

BACKGROUND: People with motor neuron disease (pwMND) are routinely offered gastrostomy feeding tube placement and (non-invasive and invasive) ventilation to manage the functional decline associated with the disease. This study aimed to synthesise the findings from the qualitative literature to understand how individual, clinical team and organisational factors influence pwMND decisions about these interventions. METHODS: The study design was guided by the enhancing transparency in reporting the synthesis of qualitative research (ENTREC) statement. The search of five bibliography databases and an extensive supplementary search strategy identified 27 papers that included qualitative accounts of pwMND, caregivers and healthcare professionals' (HCPs) experiences of making decisions about gastrostomy and ventilation. The findings from each study were included in a thematic synthesis. FINDINGS: Making decisions about interventions is an emotional rather than simply a functional issue for pwMND. The interventions can signal an end to normality, and increasing dependence, where pwMND consider the balance between quality of life and extending survival. Interactions with multiple HCPs and caregivers can influence the process of decision-making and the decisions made. These interactions contribute to the autonomy pwMND are able to exert during decision-making. HCPs can both promote and threaten pwMND perceived agency over decisions through how they approach discussions about these interventions. Though there is uncertainty over the timing of interventions, pwMND who agree to interventions report reaching a tipping point where they accept the need for change. CONCLUSION: Discussion of gastrostomy and ventilation options generate an emotional response in pwMND. Decisions are the consequence of interactions with multiple external agents, including HCPs treading a complex ethical path when trying to improve health outcomes while respecting pwMND right to autonomy. Future decision support interventions that address the emotional response and seek to support autonomy have the potential to enable pwMND to make informed and timely decisions about gastrostomy placement and ventilation. PATIENT OR PUBLIC CONTRIBUTION: The lead author collaborated with several patient and participant involvement (PPI) groups with regards to the conceptualisation and design of this project. Decisions that have been influenced by discussions with multiple PPI panels include widening the scope of decisions about ventilation in addition to gastrostomy placement and the perceptions of all stakeholders involved (i.e., pwMND, caregivers and HCPs).

Managing ovarian hyperstimulation syndrome: A qualitative interview study with women and healthcare professionals.

AIM: To explore the experiences of women who have had ovarian hyperstimulation syndrome, and healthcare professionals who care for them. BACKGROUND: Ovarian hyperstimulation syndrome is a side effect of fertility treatment. Little research exists internationally that explores the experiences of women who have had this condition, or the healthcare professionals who manage it. DESIGN: Qualitative study using semi-structured interviews. METHODS: Eighteen interviews with women who had experienced ovarian hyperstimulation syndrome (n = 10) and healthcare professionals (n = 8) in six UK fertility centres. Framework analysis was used. This paper is reported following COREQ guidelines. RESULTS: Women described a range of symptoms and severity, sometimes experiencing worrying physical health problems such as abdominal swelling and shortness of breath. The combination of the symptoms, and their management, on delaying future fertility treatment could cause emotional distress. Healthcare professionals at different centres described variation in practice, which generally involved 'active monitoring' until symptoms became severe, when women would be hospitalised. Women expressed feeling 'left in limbo' while waiting for symptoms to improve or worsen, and described a lack of control during this waiting period. Healthcare professionals felt they provided adequate information about ovarian hyperstimulation syndrome and its management. This, however, did not align with women's perceptions that information, including potential delays to their fertility treatment, was missing. There was similar mismatch between women's and healthcare professionals' views of decision-making about fertility treatment following ovarian hyperstimulation syndrome, including women's concerns about having to make rushed, unplanned decisions about their fertility treatment when they did not feel adequately informed to do so. CONCLUSION: Ovarian hyperstimulation syndrome and its management can have a significant physical and emotional impact on women, and influence their fertility treatment. Improvements could be made to the information women receive about this condition, its management and its implications for wider fertility treatment. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: Nurses have the skills and knowledge to support women through the physical and emotional stresses of fertility treatment. Therefore, they are well placed to provide specialist information and support for OHSS and ensure women are fully informed about all aspects of the condition, including how its management might delay fertility treatment.

Self-management intervention to reduce pulmonary exacerbations by supporting treatment adherence in adults with cystic fibrosis: a randomised controlled trial.

INTRODUCTION: Recurrent pulmonary exacerbations lead to progressive lung damage in cystic fibrosis (CF). Inhaled medications (mucoactive agents and antibiotics) help prevent exacerbations, but objectively measured adherence is low. We investigated whether a multi-component (complex) self-management intervention to support adherence would reduce exacerbation rates over 12 months. METHODS: Between October 2017 and May 2018, adults with CF (aged ≥16 years; 19 UK centres) were randomised to the intervention (data-logging nebulisers, a digital platform and behavioural change sessions with trained clinical interventionists) or usual care (data-logging nebulisers). Outcomes included pulmonary exacerbations (primary outcome), objectively measured adherence, body mass index (BMI), lung function (FEV1) and Cystic Fibrosis Questionnaire-Revised (CFQ-R). Analyses were by intent to treat over 12 months. RESULTS: Among intervention (n=304) and usual care (n=303) participants (51% female, median age 31 years), 88% completed 12-month follow-up. Mean exacerbation rate was 1.63/year with intervention and 1.77/year with usual care (adjusted ratio 0.96; 95% CI 0.83 to 1.12; p=0.64). Adjusted mean differences (95% CI) were in favour of the intervention versus usual care for objectively measured adherence (9.5% (8.6% to 10.4%)) and BMI (0.3 (0.1 to 0.6) kg/m2), with no difference for %FEV1 (1.4 (-0.2 to 3.0)). Seven CFQ-R subscales showed no between-group difference, but treatment burden reduced for the intervention (3.9 (1.2 to 6.7) points). No intervention-related serious adverse events occurred. CONCLUSIONS: While pulmonary exacerbations and FEV1 did not show statistically significant differences, the intervention achieved higher objectively measured adherence versus usual care. The adherence difference might be inadequate to influence exacerbations, though higher BMI and lower perceived CF treatment burden were observed.

Learning from COVID-19 related trial adaptations to inform efficient trial design-a sequential mixed methods study.

BACKGROUND: Many clinical trial procedures were often undertaken in-person prior to the COVID-19 pandemic, which has resulted in adaptations to these procedures to enable trials to continue. The aim of this study was to understand whether the adaptations made to clinical trials by UK Clinical Trials Units (CTUs) during the pandemic have the potential to improve the efficiency of trials post-pandemic. METHODS: This was a mixed methods study, initially involving an online survey administered to all registered UK CTUs to identify studies that had made adaptations due to the pandemic. Representatives from selected studies were qualitatively interviewed to explore the adaptations made and their potential to improve the efficiency of future trials. A literature review was undertaken to locate published evidence concerning the investigated adaptations. The findings from the interviews were reviewed by a group of CTU and patient representatives within a workshop, where discussions focused on the potential of the adaptations to improve the efficiency of future trials. RESULTS: Forty studies were identified by the survey. Fourteen studies were selected and fifteen CTU staff were interviewed about the adaptations. The workshop included 15 CTU and 3 patient representatives. Adaptations were not seen as leading to direct efficiency savings for CTUs. However, three adaptations may have the potential to directly improve efficiencies for trial sites and participants beyond the pandemic: a split remote-first eligibility assessment, recruitment outside the NHS via a charity, and remote consent. There was a lack of published evidence to support the former two adaptations, however, remote consent is widely supported in the literature. Other identified adaptations may benefit by improving flexibility for the participant. Barriers to using these adaptations include the impact on scientific validity, limitations in the role of the CTU, and participant's access to technology. CONCLUSIONS: Three adaptations (a split remote-first eligibility assessment, recruitment outside the NHS via a charity, and remote consent) have the potential to improve clinical trials but only one (remote consent) is supported by evidence. These adaptations could be tested in future co-ordinated 'studies within a trial' (SWAT).

The use of co-production, co-design and co-creation to mobilise knowledge in the management of health conditions: a systematic review.

BACKGROUND: Knowledge mobilisation is a term used in healthcare research to describe the process of generating, sharing and using evidence. 'Co'approaches, such as co-production, co-design and co-creation, have been proposed as a way of overcoming the knowledge to practice gap. There is a need to understand why researchers choose to adopt these approaches, how they achieve knowledge mobilisation in the management of health conditions, and the extent to which knowledge mobilisation is accomplished. METHODS: Studies that explicitly used the terms co-production, co-design or co-creation to mobilise knowledge in the management of health conditions were included. Web of Science, EMBASE via OvidSP, MEDLINE via OvidSP and CINHAL via EBSCO databases were searched up to April 2021. Quality assessment was carried out using the Joanna Briggs Institute qualitative quality assessment checklist. Pluye and Hong's seven steps for mixed studies reviews were followed. Data were synthesised using thematic synthesis. RESULTS: Twenty four international studies were included. These were qualitative studies, case studies and study protocols. Key aspects of 'co'approaches were bringing people together as active and equal partners, valuing all types of knowledge, using creative approaches to understand and solve problems, and using iterative prototyping techniques. Authors articulated mechanisms of action that included developing a shared understanding, identifying and meeting needs, giving everyone a voice and sense of ownership, and creating trust and confidence. They believed these mechanisms could produce interventions that were relevant and acceptable to stakeholders, more useable and more likely to be implemented in healthcare. Varied activities were used to promote these mechanisms such as interviews and creative workshops. There appeared to be a lack of robust evaluation of the interventions produced so little evidence in this review that 'co'approaches improved the management of health conditions. CONCLUSION: Those using 'co'approaches believed that they could achieve knowledge mobilisation through a number of mechanisms, but there was no evidence that these led to improved health. The framework of key aspects and mechanisms of 'co'approaches developed here may help researchers to meet the principles of these approaches. There is a need for robust evaluation to identify whether 'co'approaches produce improved health outcomes. TRIAL REGISTRATION: PROSPERO CRD42020187463 .

Tendency to call an ambulance or attend an emergency department for minor or non-urgent problems: a vignette-based population survey in Britain.

BACKGROUND: There are concerns about high levels of demand for emergency health services. The aim was to identify the characteristics of the British population with a tendency to contact emergency medical services and EDs for minor or non-urgent problems. METHODS: A survey of the British adult population in 2018. Six vignettes were constructed about illness in adults (cough/sore throat or diarrhoea/vomiting), injury in adults (sore rib or back pain) and fever in children (occurring weekday or weekend). RESULTS: The response rate was 42%, with 2906 respondents. 11% (319/2716) of respondents selected to contact an ambulance and 43% ED, mainly for the vignettes about fever in children and sore rib. Males, people from ethnic minority communities and older people had a tendency to contact emergency services for minor problems. Tendency to call an ambulance was also characterised by 'low resources' (manual or unskilled occupations, no car, low health literacy), worry that a symptom might be serious, distress (feeling overwhelmed by health problems) and frequent use of EDs. For EDs, there was an attraction to EDs because of availability of tests. CONCLUSION: Whereas use of emergency ambulances for minor or non-urgent problems appeared to be driven by people's lack of resources, including lack of transport, use of EDs appeared to be driven by their attractive characteristic of offering tests quickly.

Socioeconomic Deprivation and Dropout from Contemporary Psychological Intervention for Common Mental Disorders: A Systematic Review.

Dropout during psychological intervention is a significant problem. Previous evidence for associations with socioeconomic deprivation is mixed. This study aimed to review the evidence for associations between deprivation and dropout from contemporary adult psychological interventions for common mental disorders (CMDs). Systematic review, narrative synthesis and random effects meta-analysis of peer-reviewed English language journal articles published June 2010-June 2020 was conducted. Data sources included medline, PsycInfo, databases indexed by web of science, ProQuest social science database and sociology collection, and the Cochrane Library, supplemented by forward and backward citation searching. Five studies were eligible for inclusion (mean N = 170, 68% female, 60% White Caucasian, 32% dropout rate, predominantly cognitive behaviour therapy/cognitive processing therapy). Narrative synthesis indicated an overall non-significant effect of deprivation on dropout. Meta-analytic significance of controlled (k = 3) and uncontrolled (k = 4) effects depended on the measure of deprivation included for those studies using more than one measure (controlled OR 1.21-1.32, p = 0.019-0.172, uncontrolled OR 1.28-1.76, p = 0.024-0.423). The low number of included studies meant sub-group comparisons were limited, despite some tentative indications of potential differential effects. A comparator set of excluded studies showed similar uncertainty. There was limited evidence that did not overall suggest a clear significant effect of deprivation on dropout from contemporary individual CMD interventions. However, more contemporary research is needed, as effects may vary according to clinical and methodological factors, and for dropout versus non-initiation.

Understanding young adults' reasons for seeking 'clinically unnecessary' urgent and emergency care: A qualitative interview study.

BACKGROUND: Studies have identified young adults as more likely to use emergency departments for 'clinically unnecessary' problems, with limited similar evidence for emergency ambulance use. Media portrayals depict young adults as motivated by 'convenience', but little research has explored the reasons for their help-seeking behaviour. METHODS: Qualitative interviews with 16 young adults (18-30) considered by clinicians to have made unnecessary use of emergency ambulance, emergency department or an urgent GP appointment. Data analysis was informed by interpretive phenomenological analysis. FINDINGS: A number of interrelated factors contributed to participants' decisions. They were anxious about the seriousness of their symptoms, sometimes exacerbated by reduced coping capacity due to poor mental health or life stresses. They looked to others to facilitate their decision making, who sometimes encouraged urgent contact. They wanted to avoid impact on existing day-to-day commitments including work or study. They had strong views about different health services, sometimes based on frustration with lack of resolution of on-going health problems. Convenience was not identified as a significant factor, although some actions could be interpreted in this light if the context was not considered. CONCLUSIONS: Young adults make 'clinically unnecessary' use of urgent and emergency care for more than convenience. Their decisions need to be understood in relation to the complexity of their experience, including lack of confidence in making health-related decisions, lowered coping capacity and concern to maintain normal daily life.

'Clinically unnecessary' use of emergency and urgent care: A realist review of patients' decision making.

BACKGROUND: Demand is labelled 'clinically unnecessary' when patients do not need the levels of clinical care or urgency provided by the service they contact. OBJECTIVE: To identify programme theories which seek to explain why patients make use of emergency and urgent care that is subsequently judged as clinically unnecessary. DESIGN: Realist review. METHODS: Papers from four recent systematic reviews of demand for emergency and urgent care, and an updated search to January 2017. Programme theories developed using Context-Mechanism-Outcome chains identified from 32 qualitative studies and tested by exploring their relationship with existing health behaviour theories and 29 quantitative studies. RESULTS: Six mechanisms, based on ten interrelated programme theories, explained why patients made clinically unnecessary use of emergency and urgent care: (a) need for risk minimization, for example heightened anxiety due to previous experiences of traumatic events; (b) need for speed, for example caused by need to function normally to attend to responsibilities; (c) need for low treatment-seeking burden, caused by inability to cope due to complex or stressful lives; (d) compliance, because family or health services had advised such action; (e) consumer satisfaction, because emergency departments were perceived to offer the desired tests and expertise when contrasted with primary care; and (f) frustration, where patients had attempted and failed to obtain a general practitioner appointment in the desired timeframe. Multiple mechanisms could operate for an individual. CONCLUSIONS: Rather than only focusing on individuals' behaviour, interventions could include changes to health service configuration and accessibility, and societal changes to increase coping ability.

Health literacy levels of British adults: a cross-sectional survey using two domains of the Health Literacy Questionnaire (HLQ).

BACKGROUND: A person's health literacy determines whether they are able to make appropriate health decisions and are able to follow treatment instructions. This is important because low health literacy is associated with mortality and extra costs to the healthcare system. Our aim was to describe the health literacy levels of British adults using a nationally representative population survey, and show how health literacy levels vary by population characteristics. METHODS: A population based cross-sectional survey including questions from two domains from the Health Literacy Questionnaire™: 1) Understanding health information well enough to know what to do, and 2) Ability to actively engage with health care providers. Both domains are made up of 5 Likert style questions with 5 levels ranging from 'cannot do or always difficult' (1) to 'always easy' (5). The survey was conducted by NatCen in Britain (2018) as part of the annual British Social Attitudes survey. We used weighted descriptive analyses and regression to explore the relationship between population characteristics and health literacy. Weighted analyses were used to ensure the sample was representative of the British population. RESULTS: A total of 2309 responded to the questionnaire. The mean score for 'understanding information' was 3.98 (95% CI: 3.94, 4.02) and for 'ability to engage' was 3.83 (95% CI: 3.80, 3.87), where 5 is the highest score. 19.4% had some level of difficulty reading and understanding written health information, and 23.2% discussing health concerns with health care providers. The adjusted logistic regression for 'understanding information' showed that those with lower health literacy were more likely to be in the most socially deprived quintile (OR 2.500 95% CI: 1.180, 5.296), have a limiting health condition or disability (OR 4.326 95% CI: 2.494, 7.704), and have no educational qualifications (OR 7.588 95% CI: 3.305, 17.422). This was similar for the 'ability to engage' domain. CONCLUSIONS: This study described the distribution of health literacy levels for the British population in 2018. Interventions to improve health literacy will best be targeted at those with lower levels of education, those living in the most deprived areas, and those with a limiting health condition or disability.

Mechanisms of Action of a Web-Based Intervention With Health Professional Support to Increase Adherence to Nebulizer Treatments in Adults With Cystic Fibrosis: Qualitative Interview Study.

BACKGROUND: Adherence to nebulizer treatments in adults with cystic fibrosis (CF) is often low. A new complex intervention to help adults with CF increase their adherence to nebulizer treatments was tested in a pilot randomized controlled trial (RCT) in 2 UK CF centers. Patients used a nebulizer with electronic monitoring capabilities that transferred data automatically to a digital platform (CFHealthHub) to monitor adherence over time and to a tailored website to display graphs of adherence data and educational and problem-solving information about adherence. A trained interventionist helped patients identify ways to increase their adherence. OBJECTIVE: This study aims to explore the mechanisms of action underpinning the intervention. METHODS: A qualitative interview study was conducted concurrently with a pilot RCT. In total, 25 semistructured interviews were conducted with 3 interventionists at 2 time points, 14 patients in the intervention arm of the trial, and 5 members of the multidisciplinary teams offering wider care to patients. A framework approach was used for the analysis. RESULTS: The intervention was informed by a theoretical framework of behavior change. There was evidence of the expected behavior change mechanisms of action. There was also evidence of additional mechanisms of action associated with effective telehealth interventions for self-management support: relationships, visibility, and fit. Patients described how building a relationship with the interventionist through face-to-face visits with someone who cared about them and their progress helped them to consider ways of increasing adherence to medication. Rather than seeing the visibility of adherence data to clinicians as problematic, patients found this motivating, particularly if they received praise about progress made. The intervention was tailored to individuals, but there were challenges in how the intervention fitted into some patients' busy lives when delivered through a desktop computer. CONCLUSIONS: The mechanisms of action associated with effective telehealth interventions for self-management operated within this new intervention. The intervention was modified to strengthen mechanisms of action based on these findings, for example, delivery through an app accessed via mobile phones and then tested in an RCT in 19 UK CF centers. TRIAL REGISTRATION: International Standard Randomized Controlled Trial Number 13076797; http://www.isrctn.com/ISRCTN13076797.

How can pain management in the emergency department be improved? Findings from multiple case study analysis of pain management in three UK emergency departments.

INTRODUCTION: Inadequate pain management in EDs is a worldwide problem, yet there has been little progress in understanding how pain management can be improved. There is only weak evidence and limited rationale to support interventions to improve pain management. We used naturalistic, qualitative methods to understand the factors that influence how pain is managed within the adult ED. METHODS: We used a multiple case study design incorporating 143-hour non-participant observation, documentary analysis and semistructured interviews with 37 staff and 19 patients at three EDs in the North of England between 2014 and 2016. We analysed data using thematic analysis. RESULTS: Our analysis demonstrated that pain management was not well aligned with the core priorities of the ED and was overlooked when other works took priority. We identified that (1) pain management was not perceived to be a key organisational priority for which staff were held accountable and staff had limited awareness of their performance, (2) pain management was not a core component of ED education and training, (3) ED processes and structures were not aligned with pain management and pain reassessment was overlooked unless staff escalated pain management outside of normal processes and (4) staff held embedded beliefs that conceptualised pain management as distinct from core priorities and limited their capacity to improve. However, EDs were able to improve pain management by aligning processes of pain management with other core works, particularly patient flow (eg, nurse-initiated analgesia at triage). IMPLICATIONS: EDs may be able to improve pain management by ensuring pain management processes align with key ED priorities. Undertaking multifaceted changes to structures and processes may enable staff to improve pain management and develop a culture in which pain management can be prioritised more easily. Future interventions need to be compatible with the wider work of the ED and enable patient flow in order to be adopted and maintained.

The Reality of Pain Scoring in the Emergency Department: Findings From a Multiple Case Study Design.

STUDY OBJECTIVE: Documentation of pain severity with pain scores is recommended within emergency departments (EDs) to improve consistency of assessment and management of pain. Pain scores are used in treatment guidelines and triage algorithms to determine pain management and in audit and research to evaluate pain management practices. Despite significant debate of their benefits, there has been limited evaluation of their use in practice. We use naturalistic, qualitative methods to understand how pain scores are used in practice and the mechanisms by which pain scoring may influence pain management. METHODS: We undertook a multiple case study design, using qualitative research in 3 EDs in England (the cases). Case studies incorporated 143 hours of nonparticipant observation, documentary analysis, and semistructured interviews with 36 staff and 19 patients. Data were analyzed with thematic analysis. RESULTS: Analysis identified that ED staff used the pain score for 2 conflicting purposes: as an auditable tool for guiding patient management and as a tool for monitoring patient experience. This led to ED staff's facing conflict between reporting their own judgment of what the pain score ought to be and what the patient said it was. Staff justified recording their own judgment according to concerns of accountability and appropriateness of management decisions. Staff thought that pain scoring had value in raising awareness and prompting action. CONCLUSION: In practice, pain scoring may not accurately reflect patient experience. Using pain scoring to determine the appropriateness of triage and treatment decisions reduces its validity as a measure of patient experience. Pain scoring should not be central to audit and systems of accountability for pain management.

Socioeconomic disparities in access to intensive insulin regimens for adults with type 1 diabetes: a qualitative study of patient and healthcare professional perspectives.

BACKGROUND: Type 1 diabetes is a complex chronic condition which requires lifelong treatment with insulin. Health outcomes are dependent on ability to self-manage the condition. Socioeconomic inequalities have been demonstrated in access to treatment and health outcomes for adults with type 1 diabetes; however, there is a paucity of research exploring how these disparities occur. This study explores the influence of socioeconomic factors in gaining access to intensive insulin regimens for adults with type 1 diabetes. METHODS: We undertook a qualitative descriptive study informed by a phenomenological perspective. In-depth face-to-face interviews were conducted with 28 patients and 6 healthcare professionals involved in their care. The interviews were analysed using a thematic approach. The Candidacy theory for access to healthcare for vulnerable groups framed the analysis. RESULTS: Access to intensive insulin regimens was through hospital-based specialist services in this sample. Patients from lower socioeconomic groups had difficulty accessing hospital-based services if they were in low paid work and because they lacked the ability to navigate the healthcare system. Once these patients were in the specialist system, access to intensive insulin regimens was limited by non-alignment with healthcare professional goals, poor health literacy, psychosocial problems and poor quality communication. These factors could also affect access to structured diabetes education which itself improved access to intensive insulin regimens. Contact with diabetes specialist nurses and attendance at structured diabetes education courses could ameliorate these barriers. CONCLUSIONS: Access to intensive insulin regimens was hindered for people in lower socioeconomic groups by a complex mix of factors relating to the permeability of specialist services, ability to navigate the healthcare system and patient interactions with healthcare providers. Improving access to diabetes specialist nurses and structured diabetes education for vulnerable patients could lessen socioeconomic disparities in both access to services and health outcomes.

Outcomes for Patients Who Contact the Emergency Ambulance Service and Are Not Transported to the Emergency Department: A Data Linkage Study.

Objectives: Emergency ambulance services do not transport all patients to hospital. International literature reports non-transport rates ranging from 3.7-93.7%. In 2017, 38% of the 11 million calls received by ambulance services in England were attended by ambulance but not transported to an Emergency Department (ED). A further 10% received clinical advice over the telephone. Little is known about what happens to patients following a non-transport decision. We aimed to investigate what happens to patients following an emergency ambulance telephone call that resulted in a non-transport decision, using a linked routine data-set. Methods: Six-months individual patient level data from one ambulance service in England, linked with Hospital Episode Statistics and national mortality data, were used to identify subsequent health events (ambulance re-contact, ED attendance, hospital admission, death) within 3 days (primary analysis) and 7 days (secondary analysis) of an ambulance call ending in non-transport to hospital. Non-clinical staff used a priority dispatch system e.g. Medical Priority Dispatch System to prioritize calls for ambulance dispatch. Non-transport to ED was determined by ambulance crew members at scene or clinicians at the emergency operating center when an ambulance was not dispatched (telephone advice). Results: The data linkage rate was 85% for patients who were discharged at scene (43,108/50,894). After removal of deaths associated with end of life care (N = 312), 9% (3,861/42,796) re-contacted the ambulance service, 12.6% (5,412/42,796) attended ED, 6.3% (2,694/42,796) were admitted to hospital, and 0.3% (129/42,796) died within 3 days of the call. Rates were higher for events occurring within 7 days. For example, 12% re-contacted the ambulance service, 16.1% attended ED, 9.3% were admitted to hospital, and 0.5% died. The linkage rate for telephone advice calls was low because ambulance services record less information about these patients (24% 2,514/10,634). A sensitivity analysis identified a range of subsequent event rates: 2.5-10.5% of patients were admitted to hospital and 0.06-0.24% of patient died within 3 days of the call. Conclusions: Most non-transported patients did not have subsequent health events. Deaths after non-transport are an infrequent event that could be selected for more detailed review of individual cases, to facilitate learning and improvement.

Supporting medication adherence for adults with cystic fibrosis: a randomised feasibility study.

BACKGROUND: Preventative medication reduces hospitalisations in people with cystic fibrosis (PWCF) but adherence is poor. We assessed the feasibility of a randomised controlled trial of a complex intervention, which combines display of real time adherence data and behaviour change techniques. METHODS: Design: Pilot, open-label, parallel-group RCT with concurrent semi-structured interviews. PARTICIPANTS: PWCF at two Cystic Fibrosis (CF) units. Eligible: aged 16 or older; on the CF registry. Ineligible: post-lung transplant or on the active list; unable to consent; using dry powder inhalers. INTERVENTIONS: Central randomisation on a 1:1 allocation to: (1) intervention, linking nebuliser use with data recording and transfer capability to a software platform, and behavioural strategies to support self-management delivered by trained interventionists (n = 32); or, (2) control, typically face-to-face meetings every 3 months with CF team (n = 32). OUTCOMES: RCT feasibility defined as: recruitment of ≥ 48 participants (75% of target) in four months (pilot primary outcome); valid exacerbation data available for ≥ 85% of those randomised (future RCT primary outcome); change in % medication adherence; FEV1 percent predicted (key secondaries in future RCT); and perceptions of trial procedures, in semi-structured interviews with intervention (n = 14) and control (n = 5) participants, interventionists (n = 3) and CF team members (n = 5). RESULTS: The pilot trial recruited to target, randomising 33 to intervention and 31 to control in the four-month period, June-September 2016. At study completion (30th April 2017), 60 (94%; Intervention = 32, Control =28) participants contributed good quality exacerbation data (intervention: 35 exacerbations; control: 25 exacerbation). The mean change in adherence and baseline-adjusted FEV1 percent predicted were higher in the intervention arm by 10% (95% CI: -5.2 to 25.2) and 5% (95% CI -2 to 12%) respectively. Five serious adverse events occurred, none related to the intervention. The mean change in adherence was 10% (95% CI: -5.2 to 25.2), greater in the intervention arm. Interventionists delivered insufficient numbers of review sessions due to concentration on participant recruitment. This left interventionists insufficient time for key intervention procedures. A total of 10 key changes that were made to RCT procedures are summarised. CONCLUSIONS: With improved research processes and lower monthly participant recruitment targets, a full-scale trial is feasible. TRIAL REGISTRATION: ISRCTN13076797 . Prospectively registered on 07/06/2016.

When Is Forgetting Not Forgetting? A Discursive Analysis of Differences in Forgetting Talk Between Adults With Cystic Fibrosis With Different Levels of Adherence to Nebulizer Treatments.

Forgetting is often cited as a reason why people struggle to adhere to treatments for chronic conditions. Interventions have tried to improve forgetting behavior using reminders. We used a discursive psychological approach to explore differences in how high and low adherers constructed forgetting their nebulizer treatments for cystic fibrosis. Interviews were conducted with 18 adults from a cystic fibrosis center in the United Kingdom. High adherers constructed forgetting treatments as occasional lapses in automaticity and temporary lapses in memory that they found easy to repair. Low adherers utilized forgetting to normalize more consistent nonadherence to treatments. However, it is important to contextualize forgetting as a discursive resource that helped these participants to negotiate moral discourses around adherence to treatment that reminder interventions cannot address; we therefore recommend a more behavioral, patient-focused, theory-driven approach to intervention development.

Adjusting a mainstream weight management intervention for people with intellectual disabilities: a user centred approach.

BACKGROUND: People with intellectual disabilities (ID) may not be able to access and respond to uniformly delivered health interventions. Public bodies have a legal duty to make 'reasonable adjustments' to policies and practices to provide fair access and treatment for people with ID. This study aimed to identify adjustments to the Slimming World weight management programme to improve accessibility and assess acceptability and feasibility for this population. METHODS: This user-centred qualitative study was carried out with a steering group of people with ID (n = 4). Barriers and facilitators to using Slimming World were identified through interviews and focus groups with people with ID (n = 54), carers (n = 12) current members with ID (n = 8) and Slimming World group leaders (n = 11). Adjustments were made and their feasibility and acceptability were explored in a before-and-after mixed methods study where people with ID attended Slimming World for eight weeks. Participants (n = 9), carers (n = 7) and Slimming World group leaders (n = 4) were interviewed to explore their experiences of the adjustments. Participants were weighed at baseline then each week. RESULTS: Four key adjustments were identified and addressed by Slimming World who developed prototype Easy Read materials and a letter for carers. Six of the nine participants attended Slimming World for eight weeks and lost weight (1.4 kg to 6.6 kg, reduction in BMI between 0.5 and 1.7 kg/m2), indicating that the adjustments were feasible and acceptable. Two participants dropped out because they felt uncomfortable in a mainstream group and another left because they lacked control over food choice in their residential setting. CONCLUSIONS: This user-centred approach identified reasonable adjustments that were feasible to implement. In a small uncontrolled feasibility study, people with ID were positive about the adjustments and lost weight. However, issues in the wider context of people's lives, such as obesogenic environments and concerns about joining mainstream groups, limited the acceptability of Slimming World even with these adjustments. These findings have important implications for policy and suggest that environmental and organisational level interventions are needed alongside those targeting individual behaviour to tackle the obesogenic environment in which many people with ID spend their time, in order to reduce inequalities associated with the consequences of obesity.

Implementing street triage: a qualitative study of collaboration between police and mental health services.

BACKGROUND: Street Triage is a collaborative service between mental health workers and police which aims to improve the emergency response to individuals experiencing crisis, but peer reviewed evidence of the effectiveness of these services is limited. We examined the design and potential impact of two services, along with factors that hindered and facilitated the implementation of the services. METHODS: We conducted 14 semi-structured interviews with mental health and police stakeholders with experience of a Street Triage service in two locations of the UK. Framework analysis identified themes related to key aspects of the Street Triage service, perceived benefits of Street Triage, and ways in which the service could be developed in the future. RESULTS: Stakeholders endorsed the Street Triage services which utilised different operating models. These models had several components including a joint response vehicle or a mental health worker in a police control room. Operating models were developed with consideration of the local geographical and population density. The ability to make referrals to the existing mental health service was perceived as key to the success of the service yet there was evidence to suggest Street Triage had the potential to increase pressure on already stretched mental health and police services. Identifying staff with skills and experience for Street Triage work was important, and their joint response resulted in shared decision making which was less risk averse for the police and regarded as in the interest of patient care by mental health professionals. Collaboration during Street Triage improved the understanding of roles and responsibilities in the 'other' agency and led to the development of local information sharing agreements. Views about the future direction of the service focused on expansion of Street Triage to address other shared priorities such as frequent users of police and mental health services, and a reduction in the police involvement in crisis response. CONCLUSION: The Street Triage service received strong support from stakeholders involved in it. Referral to existing health services is a key function of Street Triage, and its impact on referral behaviour requires rigorous evaluation. Street Triage may result in improvement to collaborative working but competing demands for resources within mental health and police services presented challenges for implementation.

Being Human: A Qualitative Interview Study Exploring Why a Telehealth Intervention for Management of Chronic Conditions Had a Modest Effect.

BACKGROUND: Evidence of benefit for telehealth for chronic conditions is mixed. Two linked randomized controlled trials tested the Healthlines Service for 2 chronic conditions: depression and high risk of cardiovascular disease (CVD). This new telehealth service consisted of regular telephone calls from nonclinical, trained health advisers who followed standardized scripts generated by interactive software. Advisors facilitated self-management by supporting participants to use Web-based resources and helped to optimize medication, improve treatment adherence, and encourage healthier lifestyles. Participants were recruited from primary care. The trials identified moderate (for depression) or partial (for CVD risk) effectiveness of the Healthlines Service. OBJECTIVE: An embedded qualitative study was undertaken to help explain the results of the 2 trials by exploring mechanisms of action, context, and implementation of the intervention. METHODS: Qualitative interview study of 21 staff providing usual health care or involved in the intervention and 24 patients receiving the intervention. RESULTS: Interviewees described improved outcomes in some patients, which they attributed to the intervention, describing how components of the model on which the intervention was based helped to achieve benefits. Implementation of the intervention occurred largely as planned. However, contextual issues in patients' lives and some problems with implementation may have reduced the size of effect of the intervention. For depression, patients' lives and preferences affected engagement with the intervention: these largely working-age patients had busy and complex lives, which affected their ability to engage, and some patients preferred a therapist-based approach to the cognitive behavioral therapy on offer. For CVD risk, patients' motivations adversely affected the intervention whereby some patients joined the trial for general health improvement or from altruism, rather than motivation to make lifestyle changes to address their specific risk factors. Implementation was not optimal in the early part of the CVD risk trial owing to technical difficulties and the need to adapt the intervention for use in practice. For both conditions, enthusiastic and motivated staff offering continuity of intervention delivery tailored to individual patients' needs were identified as important for patient engagement with telehealth; this was not delivered consistently, particularly in the early stages of the trials. Finally, there was a lack of active engagement from primary care. CONCLUSIONS: The conceptual model was supported and could be used to develop further telehealth interventions for chronic conditions. It may be possible to increase the effectiveness of this, and similar interventions, by attending to the human as well as the technical aspects of telehealth: offering it to patients actively wanting the intervention, ensuring continuity of delivery by enthusiastic and motivated staff, and encouraging active engagement from primary care staff.