Preferences for Peer Support Amongst Families Engaged in Paediatric Screening Programmes: The Perspectives of Parents Involved in Screening for Type 1 Diabetes in Children Aged 3-13.

INTRODUCTION: This work describes a secondary analysis of a qualitative data set originally used to understand parent participants' preferences for the design and implementation of a screening programme for paediatric Type 1 diabetes (T1D). From this, their spontaneous preferences for peer support emerged, described here in the context of existing peer support programmes for the newly diagnosed alongside suggestions for their incorporation into screening programmes for T1D and a range of other conditions. METHODS: Data were collected from semi-structured interviews conducted with parents of children aged 3-13 years to explore their expectations, perceptions and preferences of a T1D paediatric screening programme. A secondary analysis of interviews from participants who spontaneously raised preferences for peer support was used to populate a novel framework informed by NHS England's key principles for the same, namely, Shared experiences and reciprocated support, Accessibility and inclusivity and Person-centred and integrated peer support. RESULTS: Parents in 29 of 33 interviews spontaneously described the potential value of peer support if receiving a result indicating a positive (presymptomatic T1D result) from a screening programme. Specifically, the value of 'Shared experiences and reciprocated support' in terms of emotional support and reassurance, and access to more directly interpretable and relevant information related to the condition; 'Accessibility and inclusivity' relating to access to a community of similar individuals, whether in person or online; 'Person-centred and integrated peer-support' and the need for support reflecting the changing need of the child and the integration of peer support with clinical care. CONCLUSIONS: The needs of peer support described by parents involved in T1D paediatric screening appear to be shared with those of families with children diagnosed with a range of life-altering conditions. Although the needs of peer support for paediatric screening may differ across conditions, our findings are a valuable starting point for its design both in T1D and other examples of similar population screening programmes. PATIENT OR PUBLIC CONTRIBUTION: Patients and the public have been involved throughout the design of the ELSA study and have worked with us to inform the study process. They contributed to the design and content of patient-facing materials, the content of our topic guides and the analysis and interpretation of our findings.

Patient Characteristics Associated With Disparities in Engagement With and Experience of COVID-19 Remote Home Monitoring Services: A Mixed-Methods Evaluation.

INTRODUCTION: The adoption of remote healthcare methods has been accelerated by the COVID-19 pandemic, but evidence suggests that some patients need additional support to engage remotely, potentially increasing health disparities if needs are not met. This study of COVID-19 remote home monitoring services across England explores experiences of and engagement with the service across different patient groups. METHODS: This was a mixed-methods study with survey and interview data collected from 28 services across England between February and June 2021. Surveys were conducted with staff and patients and carers receiving the service. Interviews with staff service leads, patients and carers were conducted in 17 sites. Quantitative data were analysed using univariate and multivariate methods, and qualitative data were analysed using thematic analysis. FINDINGS: Survey responses were received from 292 staff and 1069 patients and carers. Twenty-three staff service leads, 59 patients and 3 carers were interviewed. Many service leads reported that they had considered inclusivity when adapting the service for their local population; strategies included widening the eligibility criteria, prioritising vulnerable groups and creating referral pathways. However, disparities were reported across patient groups in their experiences and engagement. Older patients reported the service to be less helpful (p = 0.004), were more likely to report a problem (p < 0.001) and had more difficulty in understanding information (p = 0.005). Health status (p = 0.004), ethnicity (p < 0.001), gender (p < 0.001) and employment (p = 0.007) were associated with differential engagement with monitoring, and minority ethnic groups reported more difficulty understanding service information (p = 0.001). Qualitative data found illness severity to be an important factor in the support required, and patients' living situation and social network affected whether they found the service reassuring. CONCLUSION: Addressing health disparities must be a key focus in the design and delivery of remote care. Services should be tailored to match the needs of their local population, encourage access through collaboration and referral pathways with other services and monitor their inclusiveness. Involving patients and staff in service design can illuminate the diversity of patients' needs and experiences of care. PATIENT OR PUBLIC CONTRIBUTION: The study team met with service user and public members of the BRACE PPI group and patient representatives from RSET in a series of workshops. Workshops informed study design, data collection tools, data interpretation and dissemination activities. Study documents (such as consent forms, topic guides, surveys and information sheets) were reviewed by PPI members; patient surveys and interview guides were piloted, and members also commented on the manuscript.

General population screening for paediatric type 1 diabetes-A qualitative study of UK professional stakeholders.

AIMS: Identifying children at risk of type 1 diabetes allows education for symptom recognition and monitoring to reduce the risk of diabetic ketoacidosis at presentation. We aimed to explore stakeholder views towards paediatric general population screening for type 1 diabetes in the United Kingdom (UK). METHODS: Qualitative interviews were undertaken with 25 stakeholders, including diabetes specialists, policymakers and community stakeholders who could be involved in a future type 1 diabetes screening programme in the UK. A thematic framework analysis was performed using the National Screening Committee's evaluative criteria as the overarching framework. RESULTS: Diabetic ketoacidosis prevention was felt to be a priority and proposed benefits of screening included education, monitoring and helping the family to better prepare for a future with type 1 diabetes. However, diabetes specialists were cautious about general population screening because of lack of evidence for public acceptability. Concerns were raised about the harms of living with risk, provoking health anxiety and threatening the child's right to an 'open future'. Support systems that met the clinical and psychological needs of the family living with risk were considered essential. Stakeholders were supportive of research into general population screening and acknowledged this would be a priority if an immunoprevention agent were licensed in the UK. CONCLUSIONS: Although stakeholders suggested the harms of UK paediatric general population screening currently outweigh the benefits, this view would potentially be altered if prevention therapies were licensed. In this case, an evidence-based screening strategy would need to be formulated and public acceptability explored.

Views of children with diabetes from underserved communities, and their families on diabetes, glycaemic control and healthcare provision: A qualitative evidence synthesis.

AIMS: Children and young people with diabetes (CYPD) from socio-economically deprived and/or ethnic minority groups tend to have poorer glucose control and greater risk of diabetes-related complications. In this systematic review of qualitative evidence (qualitative evidence synthesis, QES), we aimed to explore the experiences and views of clinical encounters in diabetes care from the perspectives of CYPD and their family/carers from underserved communities and healthcare professionals in diabetes care. METHODS: We searched 6 databases to March 2022 with extensive search terms, and used a thematic synthesis following methods of Thomas and Harden. RESULTS: We identified 7 studies and described 11 descriptive themes based on primary and secondary constructs. From these, three "analytical themes" were developed. (1) "Alienation of CYPD" relates to their social identity and interaction with peers, family and health service practitioners in the context of diabetes self- and family/carer management and is impacted by communication in the clinical encounter. (2) "Empowerment of CYPD and family/carers" explores families' understanding of risks and consequences of diabetes and taking responsibility for self- and family/carer management in the context of their socio-cultural background. (3) "Integration of diabetes (into self and family)" focuses on the ability to integrate diabetes self-management into the daily lives of CYPD and family/carers beyond the clinical consultation. CONCLUSIONS: The analytical themes are interdependent and provide a conceptual framework from which to explore and strengthen the therapeutic alliance in clinical encounters and to foster greater concordance with treatment plans. Communicating the biomedical aspects of managing diabetes in the clinical encounter is important, but should be balanced with addressing socio-emotional factors important to CYPD and family/carers.

Developments in the design and delivery of self-management support for children and young people with diabetes: A narrative synthesis of systematic reviews.

AIMS: Facilitated self-management support programmes have become central to the treatment of chronic diseases including diabetes. For many children and young people with diabetes (CYPD), the impact on glycated haemoglobin (HbA1c ) and a range of self-management behaviours promised by these programmes remain unrealised. This warrants an appraisal of current thinking and the existing evidence to guide the development of programmes better targeted at this age group. METHODS: Create a narrative review of systematic reviews produced in the last 3 years that have explored the impact on CYPD of the four key elements of self-management support programmes: education, instruction and advice including peer support; psychological counselling via a range of therapies; self-monitoring, including diaries and telemetric devices; and telecare, the technology-enabled follow-up and support by healthcare providers. RESULTS: Games and gamification appear to offer a promising means of engaging and educating CYPD. Psychological interventions when delivered by trained practitioners, appear to improve HbA1c and quality of life although effect sizes were small. Technology-enabled interactive diaries can increase the frequency of self-monitoring and reduce levels of HbA1c . Telecare provided synchronously via telephone produced significant improvements in HbA1c . CONCLUSIONS: The cost-effective flexibility of increasing the reliance on technology is an attractive proposition; however, there are resource implications for digital connectivity in underserved populations. The need remains to improve the understanding of which elements of each component are most effective in a particular context, and how to optimise the influence and input of families, caregivers and peers.

Current evidence for designing self-management support for underserved populations: an integrative review using the example of diabetes.

AIMS: With numerous and continuing attempts at adapting diabetes self-management support programmes to better account for underserved populations, its important that the lessons being learned are understood and shared. The work we present here reviews the latest evidence and best practice in designing and embedding culturally and socially sensitive, self-management support programmes. METHODS: We explored the literature with regard to four key design considerations of diabetes self-management support programmes: Composition - the design and content of written materials and digital tools and interfaces; Structure - the combination of individual and group sessions, their frequency, and the overall duration of programmes; Facilitators - the combination of individuals used to deliver the programme; and Context - the influence and mitigation of a range of individual, socio-cultural, and environmental factors. RESULTS: We found useful and recent examples of design innovation within a variety of countries and models of health care delivery including Brazil, Mexico, Netherlands, Spain, United Kingdom, and United States of America. Within Composition we confirmed the importance of retaining best practice in creating readily understood written information and intuitive digital interfaces; Structure the need to offer group, individual, and remote learning options in programmes of flexible duration and frequency; Facilitators where the benefits of using culturally concordant peers and community-based providers were described; and finally in Context the need to integrate self-management support programmes within existing health systems, and tailor their various constituent elements according to the language, resources, and beliefs of individuals and their communities. CONCLUSIONS: A number of design principles across the four design considerations were identified that together offer a promising means of creating the next generation of self-management support programme more readily accessible for underserved communities. Ultimately, we recommend that the precise configuration should be co-produced by all relevant service and patient stakeholders and its delivery embedded in local health systems.

Patients' experiences of, and engagement with, remote home monitoring services for COVID-19 patients: A rapid mixed-methods study.

INTRODUCTION: Remote home monitoring models were implemented during the COVID-19 pandemic to shorten hospital length of stay, reduce unnecessary hospital admission, readmission and infection and appropriately escalate care. Within these models, patients are asked to take and record readings and escalate care if advised. There is limited evidence on how patients and carers experience these services. This study aimed to evaluate patient experiences of, and engagement with, remote home monitoring models for COVID-19. METHODS: A rapid mixed-methods study was carried out in England (conducted from March to June 2021). We remotely conducted a cross-sectional survey and semi-structured interviews with patients and carers. Interview findings were summarized using rapid assessment procedures sheets and data were grouped into themes (using thematic analysis). Survey data were analysed using descriptive statistics. RESULTS: We received 1069 surveys (18% response rate) and conducted interviews with patients (n = 59) or their carers (n = 3). 'Care' relied on support from staff members and family/friends. Patients and carers reported positive experiences and felt that the service and human contact reassured them and was easy to engage with. Yet, some patients and carers identified problems with engagement (e.g., hesitancy to self-escalate care). Engagement was influenced by patient factors such as health and knowledge, support from family/friends and staff, availability and ease of use of informational and material resources (e.g., equipment) and service factors. CONCLUSION: Remote home monitoring models place responsibility on patients to self-manage symptoms in partnership with staff; yet, many patients required support and preferred human contact (especially for identifying problems). Caring burden and experiences of those living alone and barriers to engagement should be considered when designing and implementing remote home monitoring services. PATIENT OR PUBLIC CONTRIBUTION: The study team met with service users and public members of the evaluation teams throughout the project in a series of workshops. Workshops informed study design, data collection tools and data interpretation and were conducted to also discuss study dissemination. Public patient involvement (PPI) members helped to pilot patient surveys and interview guides with the research team. Some members of the public also piloted the patient survey. Members of the PPI group were given the opportunity to comment on the manuscript, and the manuscript was amended accordingly.

Management of fatigue with physical activity and behavioural change support in vasculitis: a feasibility study.

OBJECTIVE: Patients with ANCA-associated vasculitis (AAV) experience high levels of fatigue, despite disease remission. This study assessed the feasibility and acceptability of a definitive randomized controlled trial of a behavioural-based physical activity intervention to support fatigue self-management in AAV patients. METHODS: AAV patients in disease remission with fatigue (Multidimensional Fatigue Inventory-20 general fatigue domain ≥14) were randomly allocated to intervention or standard care in this single-centre open-label randomized controlled feasibility study. The intervention lasted 12 weeks and comprised eight face-to-face physical activity sessions with a facilitator and 12 weekly telephone calls. Participants were encouraged to monitor their physical activity using a tracker device (Fitbit). Standard care involved sign-posting to fatigue websites. The primary outcome was feasibility of a phase III trial assessed against three stop/go traffic light criteria, (recruitment, intervention adherence and study withdrawal). A qualitative study assessed participant views about the intervention. RESULTS: A total of 248 patients were screened and 134 were eligible to participate (54%). Stop/go criteria were amber for recruitment; 43/134 (32%, 95% CI: 24, 40) eligible participants randomized, amber for adherence; 73% of participants attended all eight physical activity sessions, but only 11/22 (50%, 95% CI: 29, 71%) completed the intervention as per the intended schedule, and green for study withdrawal; 2/43 participants withdrew before 24 weeks (5%, 95% CI: 0, 11). Qualitative results suggested the intervention was acceptable. CONCLUSION: This study suggests a behavioural-based physical activity intervention targeting fatigue self-management was acceptable to patients with AAV, although recruitment and protocol adherence will need modification prior to a definitive trial. CLINICAL TRIAL REGISTRATION NUMBER: ISRCTN11929227.

A comparative assessment of two tools designed to support patient safety culture in UK general practice.

BACKGROUND: The NHS has recognised the importance of a high quality patient safety culture in the delivery of primary health care in the rapidly evolving environment of general practice. Two tools, PC-SafeQuest and MapSaf, were developed with the intention of assessing and improving patient safety culture in this setting. Both have been made widely available through their inclusion in the Royal College of General Practitioners' Patient Safety Toolkit and our work offerss a timely exploration of the tools to inform practice staff as to how each might be usefully applied and in which circumstances. Here we present a comparative analysis of their content, and describe the perspectives of staff on their design, outputs and the feasibility of their sustained use. METHODS: We have used a content analysis to provide the context for the qualitative study of staff experiences of using the tools at a representative range of practices recruited from across the Midlands (UK). Data was collected through moderated focus groups using an identical topic guide. RESULTS: A total of nine practices used the PC-SafeQuest tool and four the MapSaf tool. A total of 159 staff completed the PC-SafeQuest tool 52 of whom took part in the subsequent focus group discussions, and 25 staff completed the MapSaf tool all of whom contributed to the focus group discussions. PC-SafeQuest was perceived as quick and easy to use with direct questions pertinent to the work of GP practices providing useful quantitative insight into important areas of safety culture. Though MaPSaF was more logistically challenging, it created a forum for synchronous cross- practice discussions raising awareness of perceptions of safety culture across the practice team. CONCLUSIONS: Both tools were able to promote reflective and reflexive practice either in individual staff members or across the broader practice team and the oversight they granted provided useful direction for senior staff looking to improve patient safety. Because PC SafeQuest can be easily disseminated and independently completed it is logistically suited to larger practice organisations, whereas the MapSaf tool lends itself to smaller practices where assembling staff in a single workshop is more readily achieved.

Development of the prototype concise safe systems checklist tool for general practice.

BACKGROUND: In the course of producing a patient safety toolkit for primary care, we identified the need for a concise safe-systems checklist designed to address areas of patient safety which are under-represented in mandatory requirements and existing tools. This paper describes the development of a prototype checklist designed to be used in busy general practice environments to provide an overview of key patient safety related processes and prompt practice wide-discussion. METHODS: An extensive narrative review and a survey of world-wide general practice organisations were used to identify existing primary care patient safety issues and tools. A RAND panel of international experts rated the results, summarising the findings for importance and relevance. The checklist was created to include areas that are not part of established patient safety tools or mandatory and legal requirements. Four main themes were identified: information flow, practice safety information, prescribing, and use of IT systems from which a 13 item checklist was trialled in 16 practices resulting in a nine item prototype checklist, which was tested in eight practices. Qualitative data on the utility and usability of the prototype was collected through a series of semi-structured interviews. RESULTS: In testing the prototype four of nine items on the checklist were achieved by all eight practices. Three items were achieved by seven of eight practices and two items by six of eight practices. Participants welcomed the brevity and ease of use of the prototype, that it might be used within time scales at their discretion and its ability to engage a range of practice staff in relevant discussions on the safety of existing processes. The items relating to prescribing safety were considered particularly useful. CONCLUSIONS: As a result of this work the concise patient safety checklist tool, specifically designed for general practice, has now been made available as part of an online Patient Safety Toolkit hosted by the Royal College of General Practitioners. Senior practice staff such as practice managers and GP partners should find it a useful tool to understand the safety of less explored yet important safety processes within the practice.

General practitioners' views on use of patient reported outcome measures in primary care: a cross-sectional survey and qualitative study.

BACKGROUND: Patient reported outcome measures (PROMs) are increasingly used to assess impact of disease and treatment on quality of life and symptoms; however, their use in primary care is fragmented. We aimed to understand how PROMs are currently being used in primary care, the barriers and facilitators of this use and if appropriate how it might be optimised. METHODS: Cross-sectional survey and semi-structured interviews among general practitioners (GPs) in England. GPs' opinions were explored using an electronic, self-completed questionnaire disseminated to 100 GPs via an online doctors' community and semi-structured qualitative interviews with 25 GPs. RESULTS: Most GPs surveyed (77/100; 77%) reported using one or more PROM, primarily to aid clinical management (n = 66) or as screening/diagnostic tools (n = 62). Qualitative interviews highlighted challenges in identifying and selecting PROMs; however, some GPs valued PROMs for shared decision making and to direct patient discussions. The interviews identified key barriers to PROM use including: time constraints; insufficient knowledge; lack of integration into clinical systems; and PROMs being mandated without consultation or explanation. Evidence of the benefit of PROMs is required to promote uptake and use of PROMs in primary care. CONCLUSION: Implementation of PROMs in primary care requires integration with clinical systems, a bottom-up approach to PROM selection and system design involving meaningful consultation with patients and primary care clinicians and training/support for use.

A quantitative assessment of the parameters of the role of receptionists in modern primary care using the work design framework.

BACKGROUND: Amidst increased pressures on General Practice across England, the receptionist continues to fulfil key administrative and clinically related tasks. The need for more robust support for these key personnel to ensure they stay focussed and motivated is apparent, however, to be effective a more systematic understanding of the parameters of their work is required. Here we present a valuable insight into the tasks they fulfil, their relationship with colleagues and their organisation and their attitudes and behaviour at work collectively defined as their 'work design'. METHODS: Our aim was to quantitatively assess the various characteristics of receptionists in primary care in England using the validated Work Design Questionnaire (WDQ) a 21 point validated questionnaire, divided into four categories: task, knowledge and social characteristics and work context with a series of sub-categories within each, disseminated online and as a postal questionnaire to 100 practices nationally. RESULTS: Seventy participants completed the WDQ, 54 online and 16 using the postal questionnaire with the response rate for the latter being 3.1%. The WDQ suggested receptionists experience high levels of task variety, task significance and of information processing and knowledge demands, confirming the high cognitive load placed on receptionists by performing numerous yet significant tasks. Perhaps in relation to these substantial responsibilities a reliance on colleagues for support and feedback to help negotiate this workload was reported. CONCLUSION: The evidence of our survey suggests that the role of modern GP receptionists requires an array of skills to accommodate various administrative, communicative, problem solving, and decision-making duties. There are ways in which the role might be better supported for example devising ways to separate complex tasks to avoid the errors involved with high cognitive load, providing informal feedback, and perhaps most importantly developing training programmes.

The impact of status and social context on health service co-design: an example from a collaborative improvement initiative in UK primary care.

BACKGROUND: Increasingly, collaborative participatory methods requiring open and honest interaction between a range of stakeholders are being used to improve health service delivery. To be successful these methodologies must incorporate perspectives from a range of patients and staff. Yet, if unaccounted for, the complex relationships amongst staff groups and between patients and providers can affect the veracity and applicability of co-designed solutions. METHODS: Two focus groups convened to discuss suggestions for the improvement of blood testing and result communication in primary care. The groups were mixed of patients and staff in various combinations drawn from the four participating study practices. Here we present a secondary mixed-method analysis of the interaction between participants in both groups using sociogrammatic and thematic analysis. RESULTS: Despite a similar mix of practice staff and patients the two groups produced contrasting discussions, seemingly influenced by status and social context. The sociograms provided a useful insight into the flow of conversation and highlighted the dominance of the senior staff member in the first focus group. Within the three key themes of social context, the alliances formed between participants and the fluidity of the roles assumed manifested differently between groups apparently dictated by the different profile of the participants of each. CONCLUSIONS: For primary care service improvement attention must be paid to the background of participants when convening collaborative service improvement groups as status and imported hierarchies can have significant connotations for the data produced.

Influences on the adoption of patient safety innovation in primary care: a qualitative exploration of staff perspectives.

BACKGROUND: Primary care is changing rapidly to meet the needs of an ageing and chronically ill population. New ways of working are called for yet the introduction of innovative service interventions is complicated by organisational challenges arising from its scale and diversity and the growing complexity of patients and their care. One such intervention is the multi-strand, single platform, Patient Safety Toolkit developed to help practices provide safer care in this dynamic and pressured environment where the likelihood of adverse incidents is increasing. Here we describe the attitudes of staff toward these tools and how their implementation was shaped by a number of contextual factors specific to each practice. METHODS: The Patient Safety Toolkit comprised six tools; a system of rapid note review, an online staff survey, a patient safety questionnaire, prescribing safety indicators, a medicines reconciliation tool, and a safe systems checklist. We implemented these tools at practices across the Midlands, the North West, and the South Coast of England and conducted semi-structured interviews to determine staff perspectives on their effectiveness and applicability. RESULTS: The Toolkit was used in 46 practices and a total of 39 follow-up interviews were conducted. Three key influences emerged on the implementation of the Toolkit these related to their ease of use and the novelty of the information they provide; whether their implementation required additional staff training or practice resource; and finally factors specific to the practice's local environment such as overlapping initiatives orchestrated by their CCG. CONCLUSIONS: The concept of a balanced toolkit to address a range of safety issues proved popular. A number of barriers and facilitators emerged in particular those tools that provided relevant information with a minimum impact on practice resource were favoured. Individual practice circumstances also played a role. Practices with IT aware staff were at an advantage and those previously utilising patient safety initiatives were less likely to adopt additional tools with overlapping outputs. By acknowledging these influences we can better interpret reaction to and adoption of individual elements of the toolkit and optimise future implementation.

Adaption, implementation and evaluation of collaborative service improvements in the testing and result communication process in primary care from patient and staff perspectives: a qualitative study.

BACKGROUND: Increasing numbers of blood tests are being ordered in primary care settings and the swift and accurate communication of test results is central to providing high quality care. The process of testing and result communication is complex and reliant on the coordinated actions of care providers, external groups in laboratory and hospital settings, and patients. This fragmentation leaves it vulnerable to error and the need to improve an apparently fallible system is apparent. However, primary care is complex and does not necessarily adopt change in a linear and prescribed manner influenced by a range of factors relating to practice staff, patients and organisational factors. To account for these competing perspectives, we worked in conjunction with both staff and patients to develop and implement strategies intended to improve patient satisfaction and increase efficiency of existing processes. METHODS: The study applied the principles of 'experience-based co-design' to identify key areas of weakness and source proposals for change from staff and patients. The study was undertaken within two primary practices situated in South Birmingham (UK) of contrasting size and socio-economic environment. Senior practice staff were involved in the refinement of the interventions for introduction. We conducted focus groups singly constituted of staff and patients at each practice to determine suitability, applicability and desirability alongside the practical implications of their introduction. RESULTS: At each practice four of the six proposals for change were implemented these were increased access to phlebotomy, improved receptionist training, proactive communication of results, and increased patient awareness of the tests ordered and the means of their communication. All were received favourably by both patients and staff. The remaining issues around the management of telephone calls and the introduction of electronic alerts for missing results were not addressed due to constraints of time and available resources. CONCLUSIONS: Approaches to tackling the same area of weakness differed at practices and was determined by individual staff attitudes and by organisational and patient characteristics. The long-term impact of the changes requires further quantitative evaluation.

Test result communication in primary care: clinical and office staff perspectives.

OBJECTIVE: To understand how the results of laboratory tests are communicated to patients in primary care and perceptions on how the process may be improved. DESIGN: Qualitative study employing staff focus groups. SETTING: Four UK primary care practices. PARTICIPANTS: Staff involved in the communication of test results. FINDINGS: Five main themes emerged from the data: (i) the default method for communicating results differed between practices; (ii) clinical impact of results and patient characteristics such as anxiety level or health literacy influenced methods by which patients received their test result; (iii) which staff member had responsibility for the task was frequently unclear; (iv) barriers to communicating results existed, including there being no system or failsafe in place to determine whether results were returned to a practice or patient; (v) staff envisaged problems with a variety of test result communication methods discussed, including use of modern technologies, such as SMS messaging or online access. CONCLUSIONS: Communication of test results is a complex yet core primary care activity necessitating flexibility by both patients and staff. Dealing with the results from increasing numbers of tests is resource intensive and pressure on practice staff can be eased by greater utilization of electronic communication. Current systems appear vulnerable with no routine method of tracing delayed or missing results. Instead, practices only become aware of missing results following queries from patients. The creation of a test communication protocol for dissemination among patients and staff would help ensure both groups are aware of their roles and responsibilities.

Acceptability of community health worker and peer supported interventions for ethnic minorities with type 2 diabetes: a qualitative systematic review.

Objective: Ethnic minority groups in high income countries in North America, Europe, and elsewhere are disproportionately affected by T2DM with a higher risk of mortality and morbidity. The use of community health workers and peer supporters offer a way of ensuring the benefits of self-management support observed in the general population are shared by those in minoritized communities. Materials and methods: The major databases were searched for existing qualitative evidence of participants' experiences and perspectives of self-management support for type 2 diabetes delivered by community health workers and peer supporters (CHWPs) in ethnically minoritized populations. The data were analysed using Sekhon's Theoretical Framework of Acceptability. Results: The results are described within five domains of the framework of acceptability collapsed from seven for reasons of clarity and concision: Affective attitude described participants' satisfaction with CHWPs delivering the intervention including the open, trusting relationships that developed in contrast to those with clinical providers. In considering Burden and Opportunity Costs, participants reflected on the impact of health, transport, and the responsibilities of work and childcare on their attendance, alongside a lack of resources necessary to maintain healthy diets and active lifestyles. In relation to Cultural Sensitivity participants appreciated the greater understanding of the specific cultural needs and challenges exhibited by CHWPs. The evidence related to Intervention Coherence indicated that participants responded positively to the practical and applied content, the range of teaching materials, and interactive practical sessions. Finally, in examining the impact of Effectiveness and Self-efficacy participants described how they changed a range of health-related behaviours, had more confidence in dealing with their condition and interacting with senior clinicians and benefitted from the social support of fellow participants and CHWPs. Conclusion: Many of the same barriers around attendance and engagement with usual self-management support interventions delivered to general populations were observed, including lack of time and resource. However, the insight of CHWPs, their culturally-sensitive and specific strategies for self-management and their development of trusting relationships presented considerable advantages.

A Cost Evaluation of COVID-19 Remote Home Monitoring Services in England.

BACKGROUND: Remote home monitoring services emerged as critical components of health care delivery from NHS England during the COVID-19 pandemic, aiming to provide timely interventions and reduce health care system burden. Two types of service were offered: referral by community health services to home-based care to ensure the right people were admitted to the hospital at the right time (called COVID Oximetry@home, CO@h); and referral by hospital to support patients' transition from hospital to home (called COVID-19 Virtual Ward, CVW). The information collected for the oxygen levels and other symptoms was provided via digital means (technology-enabled) or over the phone (analogue-only submission mode). This study aimed to evaluate the costs of implementing remote home monitoring for COVID-19 patients across 26 sites in England during wave 2 of the pandemic. Understanding the operational and financial implications of these services from the NHS perspective is essential for effective resource allocation and service planning. METHODS: We used a bottom-up costing approach at the intervention level to describe the costs of setting up and running the services. Twenty-six implementation sites reported the numbers of patients and staff involved in the service and other resources used. Descriptive statistics and multivariable regression analysis were used to assess cost variations and quantify the relationship between the number of users and costs while adjusting for other service characteristics. RESULTS: The mean cost per patient monitored was lower in the CO@h service compared with the CVW service (£527 vs £599). The mean cost per patient was lower for implementation sites using technology-enabled and analogue data submission modes compared with implementation sites using analogue-only modes for both CO@h (£515 vs £561) and CVW (£584 vs £612) services. The number of patients enrolled in the services and the service type significantly affected the mean cost per patient. CONCLUSIONS: Our analysis provides a framework for evaluating the costs of similar services in the future and shows that the implementation of these services benefit from the employment of tech-enabled data submission modes.

"You're only a receptionist, what do you want to know for?": Street-level bureaucracy on the front line of primary care in the United Kingdom.

Introduction: In care settings across the globe non-clinical staff are involved in filtering patients to the most appropriate source of care. This includes primary care where general practice receptionists are key in facilitating access to individual surgeries and the wider National Health Service. Despite the complexity and significance of their role little is known of how the decision-making behaviors of receptionists impact policy implementation and service delivery. By combining the agent-based implementation theory of street-level bureaucracy with a tri-level analytical framework this work acknowledges the impact of the decisions made by receptionists as street-level bureaucrats and demonstrates the benefits of using the novel framework to provide practical insight of the factors influencing those decisions. Methods: A secondary analysis of qualitative data gathered from a series of semi-structured interviews conducted with 19 receptionists in the United Kingdom in 2019 was used to populate a tri-level framework: the micro-level relates to influences on decision making acting at an individual level, the meso-level influences at group and organizational levels, and the macro-level influences at a societal or policy level. Results: At the micro-level we determined how receptionists are influenced by the level of rapport developed with patients and would use common sense to interpret urgency. At the meso-level, influences included their position at the forefront of premises, the culture of the workplace, and the processes and protocols used by their practice. At the macro-level, participants described the impact of limited health service capacity, the lack of mandatory training, and the growth in the use of digital technologies. Conclusions: Street-level bureaucracy, complemented with a tri-level contextual analysis, is a useful theoretical framework to understand how health workers, such as receptionists, attempt to provide universality without sufficient resource, and could potentially be applied to other kinds of public service workers in this way. This theoretical framework also benefits from being an accessible foundation on which to base practice and policy changes.

"I just wanted to speak to someone- and there was no one ": using Burden of Treatment Theory to understand the impact of a novel ATMP on early recipients.

BACKGROUND: Advanced therapy medicinal products such as Chimeric antigen receptor T-cell therapy offer ground-breaking opportunities for the treatment of various cancers, inherited diseases, and chronic conditions. With development of these novel therapies continuing to increase it's important to learn from the experiences of patients who were among the first recipients of ATMPs. In this way we can improve the clinical and psychosocial support offered to early patient recipients in the future to support the successful completion of treatments and trials. STUDY DESIGN: We conducted a qualitative investigation informed by the principles of the key informant technique to capture the experience of some of the first patients to experience CAR-T therapy in the UK. A directed content analysis was used to populate a theoretical framework informed by Burden of Treatment Theory to determine the lessons that can be learnt in supporting their care, support, and ongoing self-management. RESULTS: A total of five key informants were interviewed. Their experiences were described within the three domains of the burden of treatment framework; (1) The health care tasks delegated to patients, Participants described the frequency of follow-up and the resources involved, the esoteric nature of the information provided by clinicians; (2) Exacerbating factors of the treatment, which notably included the lack of understanding of the clinical impacts of the treatment in the broader health service, and the lack of a peer network to support patient understanding; (3) Consequences of the treatment, in which they described the anxiety induced by the process surrounding their selection for treatment, and the feeling of loneliness and isolation at being amongst the very first recipients. CONCLUSIONS: If ATMPs are to be successfully introduced at the rates forecast, then it is important that the burden placed on early recipients is minimised. We have discovered how they can feel emotionally isolated, clinically vulnerable, and structurally unsupported by a disparate and pressured health service. We recommend that where possible, structured peer support be put in place alongside signposting to additional information that includes the planned pattern of follow-up, and the management of discharged patients would ideally accommodate individual circumstances and preferences to minimize the burden of treatment.