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1.
Heliyon ; 9(11): e21298, 2023 Nov.
Artículo en Inglés | MEDLINE | ID: mdl-38053872

RESUMEN

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.

2.
Health Soc Care Deliv Res ; 11(17): 1-114, 2023 Oct.
Artículo en Inglés | MEDLINE | ID: mdl-37839807

RESUMEN

Background: Vertical integration means merging organisations that operate at different stages along the patient pathway. We focus on acute hospitals running primary care medical practices. Evidence is scarce concerning the impact on use of health-care services and patient experience. Objectives: To assess the impact of vertical integration on use of hospital services, service delivery and patient experience and whether patients with multiple long-term conditions are affected differently from others. Design: Rapid, mixed methods evaluation with four work packages: (1) review of NHS trust annual reports and other sources to understand the scale of vertical integration across England; (2) development of the statistical analysis; (3) analysis of national survey data on patient experience, and national data on use of hospital services over the 2 years preceding and following vertical integration, comparing vertically integrated practices with a variety of control practices; and (4) focus groups and interviews with staff and patients across three case study sites to explore the impact of vertical integration on patient experience of care. Results: At 31 March 2021, 26 NHS trusts were in vertically integrated organisations, running 85 general practices across 116 practice sites. The earliest vertical integration between trusts and general practices was in 2015; a mean of 3.3 practices run by each trust (range 1-12). On average, integrated practices have fewer patients, are slightly more likely to be in the most deprived decile of areas, are more likely to hold an alternative provider medical services contract and have worse Quality and Outcomes Framework scores compared with non-integrated practices. Vertical integration is associated with statistically significant, modest reductions in rates of accident and emergency department attendances: 2% reduction (incidence rate ratio 0.98, 95% confidence interval 0.96 to 0.99; p < 0.0001); outpatient attendances: 1% reduction (incidence rate ratio 0.99, 95% confidence interval 0.99 to 1.00; p = 0.0061), emergency inpatient admissions: 3% reduction (incidence rate ratio 0.97, 95% confidence interval 0.95 to 0.99; p = 0.0062) and emergency readmissions: 5% reduction (incidence rate ratio 0.95, 95% confidence interval 0.91 to 1.00; p = 0.039), with no impact on length of stay, overall inpatient admissions or inpatient admissions for ambulatory care sensitive conditions. The falls in accident and emergency department and outpatient attendance rates are temporary. Focus groups and interviews with staff (N = 22) and interviews with patients (N = 14) showed that with vertical integration, health service improvements are introduced following a period of cultural interchange. Patients with multiple long-term conditions continue to encounter 'navigation work' choosing and accessing health-care provision, with diminishing continuity of care. Limitations: In the quantitative analysis, we could not replicate the counterfactual of what would have happened in those specific locations had practices not merged with trusts. There was imbalance across three case study sites with regard to staff and patients recruited for interview, and the latter were drawn from patient participation groups who may not be representative of local populations. Conclusions: Vertical integration can lead to modest reductions in use of hospital services and has minor or no impact on patient experience of care. Our analysis does not reveal a case for widespread roll-out of the approach. Future research: Further quantitative follow-up of the longer-term impact of vertical integration on hospital usage and more extensive interviewing of patients and their carers about patient experiences of navigating care. Funding: This project was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme (BRACE Project no. 16/138/31) and will be published in full in Health and Social Care Delivery Research; Vol. 11, No. 17. See the NIHR Journals Library website for further project information.


Asunto(s)
Pacientes Internos , Pacientes Ambulatorios , Humanos , Inglaterra , Academias e Institutos , Hospitales
3.
Health Soc Care Deliv Res ; 11(13): 1-151, 2023 Jul.
Artículo en Inglés | MEDLINE | ID: mdl-37800997

RESUMEN

Background: Remote home monitoring services were developed and implemented for patients with COVID-19 during the pandemic. Patients monitored blood oxygen saturation and other readings (e.g. temperature) at home and were escalated as necessary. Objective: To evaluate effectiveness, costs, implementation, and staff and patient experiences (including disparities and mode) of COVID-19 remote home monitoring services in England during the COVID-19 pandemic (waves 1 and 2). Methods: A rapid mixed-methods evaluation, conducted in two phases. Phase 1 (July-August 2020) comprised a rapid systematic review, implementation and economic analysis study (in eight sites). Phase 2 (January-June 2021) comprised a large-scale, multisite, mixed-methods study of effectiveness, costs, implementation and patient/staff experience, using national data sets, surveys (28 sites) and interviews (17 sites). Results: Phase 1 Findings from the review and empirical study indicated that these services have been implemented worldwide and vary substantially. Empirical findings highlighted that communication, appropriate information and multiple modes of monitoring facilitated implementation; barriers included unclear referral processes, workforce availability and lack of administrative support. Phase 2 We received surveys from 292 staff (39% response rate) and 1069 patients/carers (18% response rate). We conducted interviews with 58 staff, 62 patients/carers and 5 national leads. Despite national roll-out, enrolment to services was lower than expected (average enrolment across 37 clinical commissioning groups judged to have completed data was 8.7%). There was large variability in implementation of services, influenced by patient (e.g. local population needs), workforce (e.g. workload), organisational (e.g. collaboration) and resource (e.g. software) factors. We found that for every 10% increase in enrolment to the programme, mortality was reduced by 2% (95% confidence interval: 4% reduction to 1% increase), admissions increased by 3% (-1% to 7%), in-hospital mortality fell by 3% (-8% to 3%) and lengths of stay increased by 1.8% (-1.2% to 4.9%). None of these results are statistically significant. We found slightly longer hospital lengths of stay associated with virtual ward services (adjusted incidence rate ratio 1.05, 95% confidence interval 1.01 to 1.09), and no statistically significant impact on subsequent COVID-19 readmissions (adjusted odds ratio 0.95, 95% confidence interval 0.89 to 1.02). Low patient enrolment rates and incomplete data may have affected chances of detecting possible impact. The mean running cost per patient varied for different types of service and mode; and was driven by the number and grade of staff. Staff, patients and carers generally reported positive experiences of services. Services were easy to deliver but staff needed additional training. Staff knowledge/confidence, NHS resources/workload, dynamics between multidisciplinary team members and patients' engagement with the service (e.g. using the oximeter to record and submit readings) influenced delivery. Patients and carers felt services and human contact received reassured them and were easy to engage with. Engagement was conditional on patient, support, resource and service factors. Many sites designed services to suit the needs of their local population. Despite adaptations, disparities were reported across some patient groups. For example, older adults and patients from ethnic minorities reported more difficulties engaging with the service. Tech-enabled models helped to manage large patient groups but did not completely replace phone calls. Limitations: Limitations included data completeness, inability to link data on service use to outcomes at a patient level, low survey response rates and under-representation of some patient groups. Future work: Further research should consider the long-term impact and cost-effectiveness of these services and the appropriateness of different models for different groups of patients. Conclusions: We were not able to find quantitative evidence that COVID-19 remote home monitoring services have been effective. However, low enrolment rates, incomplete data and varied implementation reduced our chances of detecting any impact that may have existed. While services were viewed positively by staff and patients, barriers to implementation, delivery and engagement should be considered. Study registration: This study is registered with the ISRCTN (14962466). Funding: This project was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme (RSET: 16/138/17; BRACE: 16/138/31) and NHSEI and will be published in full in Health and Social Care Delivery Research; Vol. 11, No. 13. See the NIHR Journals Library website for further project information. The views expressed in this publication are those of the authors and not necessarily those of the National Institute for Health and Care Research or the Department of Health and Social Care.


COVID-19 patients can experience very low oxygen levels, without feeling breathless. Patients may not realise there is a problem until they become extremely unwell, risking being admitted to hospital too late. To address this, COVID-19 remote home monitoring services were developed and later rolled out across England. Patients monitored oxygen levels at home using an 'oximeter' (a small device which clips on to your finger) and sent these readings to providers via phone or technology (e.g. an app). Patients could access further care if needed. We did not know whether these services worked, or what people felt about them. • How services were set up and used in England. • Whether services work (e.g. by reducing deaths and length of hospital stay). • How much they cost. • What patients, carers and staff think about these services (including differences between groups and telephone vs. technology). We looked at available existing evidence and collected data from eight services operating in the first wave of the pandemic. During the second wave of the pandemic, we used data available at a national level and conducted surveys (28 sites) and interviews (17 sites) with staff, patients and individuals involved in developing/leading services nationally. These services have been used worldwide, but they vary considerably. We found many things that help these services to be used (e.g. good communication) but also things that get in the way (e.g. unclear referrals). Our findings did not show that services reduce deaths or time in hospital. But these findings are limited by a lack of data. Staff and patients liked these services, but we found some barriers to delivering and using the service. Some groups found services harder to use (e.g. older patients, those with disabilities and ethnic minorities). Using technology helped with large patient groups, but it did not completely replace phone calls. Better information is needed to know whether these services work. Staff and patients liked these services. However, improvements may make them easier to deliver and use (e.g. further staff training and giving additional support to patients who need it).


Asunto(s)
COVID-19 , Anciano , Humanos , Academias e Institutos , Tirantes , COVID-19/epidemiología , Inglaterra/epidemiología , Pandemias , Revisiones Sistemáticas como Asunto
4.
Int J Med Inform ; 179: 105230, 2023 Nov.
Artículo en Inglés | MEDLINE | ID: mdl-37774428

RESUMEN

OBJECTIVE: To evaluate patient and staff experiences of using technology-enabled ('tech-enabled') and analogue remote home monitoring models for COVID-19, implemented in England during the pandemic. METHODS: Twenty-eight sites were selected for diversity in a range of criteria (e.g. pre-hospital or early discharge service, mode of patient data submission). Between February and May 2021, we conducted quantitative surveys with patients, carers and staff delivering the service, and interviewed patients, carers, and staff from 17 of the 28 services. Quantitative data were analysed using descriptive statistics and both univariate and multivariate analyses. Qualitative data were interpreted using thematic analysis. RESULTS: Twenty-one sites adopted mixed models whereby patients could submit their symptoms using either tech-enabled (app, weblink, or automated phone calls) or analogue (phone calls with a health professional) options; seven sites offered analogue-only data submission (phone calls or face-to-face visits with a health professional). Sixty-two patients and carers were interviewed, and 1069 survey responses were received (18 % response rate). Fifty-eight staff were interviewed, and 292 survey responses were received (39 % response rate). Patients who used tech-enabled modes tended to be younger (p = 0.005), have a higher level of education (p = 0.011), and more likely to identify as White British (p = 0.043). Most patients found relaying symptoms easy, regardless of modality, though many received assistance from family or friends. Staff considered the adoption of mixed delivery models beneficial, enabling them to manage large patient numbers and contact patients for further assessment as needed; however, they suggested improvements to the functionality of systems to better fit clinical and operational needs. Human contact was important in all remote home monitoring options. CONCLUSIONS: Organisations implementing tech-enabled remote home monitoring at scale should consider adopting mixed models which can accommodate patients with different needs; focus on the usability and interoperability of tech-enabled platforms; and encourage digital inclusivity for patients.

5.
Int J Equity Health ; 22(1): 188, 2023 09 11.
Artículo en Inglés | MEDLINE | ID: mdl-37697302

RESUMEN

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.


Asunto(s)
Diabetes Mellitus , Automanejo , Humanos , Diabetes Mellitus/terapia , Brasil , Conductas Relacionadas con la Salud , Lenguaje
6.
Diabet Med ; 40(11): e15197, 2023 11.
Artículo en Inglés | MEDLINE | ID: mdl-37573564

RESUMEN

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.


Asunto(s)
Diabetes Mellitus , Etnicidad , Niño , Humanos , Adolescente , Control Glucémico , Grupos Minoritarios , Atención a la Salud , Investigación Cualitativa
7.
Health Soc Care Deliv Res ; 11(9): 1-64, 2023 06.
Artículo en Inglés | MEDLINE | ID: mdl-37470136

RESUMEN

Background: Digital technology is a focus within the NHS and social care as a way to improve care and address pressures. Sensor-based technology with artificial intelligence capabilities is one type of technology that may be useful, although there are gaps in evidence that need to be addressed. Objective: This study evaluates how one example of a technology using home-based sensors with artificial intelligence capabilities (pseudonymised as 'IndependencePlus') was implemented in three case study sites across England. The focus of this study was on decision-making processes and implementation. Design: Stage 1 consisted of a rapid literature review, nine interviews and three project design groups. Stage 2 involved qualitative data collection from three social care sites (20 interviews), and three interviews with technology providers and regulators. Results: • It was expected that the technology would improve care planning and reduce costs for the social care system, aid in prevention and responding to needs, support independent living and provide reassurance for those who draw on care and their carers. • The sensors were not able to collect the necessary data to create anticipated benefits. Several technological aspects of the system reduced its flexibility and were complex for staff to use. • There appeared to be no systematic decision-making process in deciding whether to adopt artificial intelligence. In its absence, a number of contextual factors influenced procurement decisions. • Incorporating artificial intelligence-based technology into existing models of social care provision requires alterations to existing funding models and care pathways, as well as workforce training. • Technology-enabled care solutions require robust digital infrastructure, which is lacking for many of those who draw on care and support. • Short-term service pressures and a sense of crisis management are not conducive to the culture that is needed to reap the potential longer-term benefits of artificial intelligence. Limitations: Significant recruitment challenges (especially regarding people who draw on care and carers) were faced, particularly in relation to pressures from COVID-19. Conclusions: This study confirmed a number of common implementation challenges, and adds insight around the specific decision-making processes for a technology that has been implemented in social care. We have also identified issues related to managing and analysing data, and introducing a technology focused on prevention into an environment which is focused on dealing with crises. This has helped to fill gaps in the literature and share practical lessons with commissioners, social care providers, technology providers and policy-makers. Future work: We have highlighted the implications of our findings for future practice and shared these with case study sites. We have also developed a toolkit for others implementing new technology into adult social care based on our findings (https://www.birmingham.ac.uk/documents/college-social-sciences/social-policy/brace/ai-and-social-care-booklet-final-digital-accessible.pdf). As our findings mirror the previous literature on common implementation challenges and a tendency of some technology to 'over-promise and under-deliver', more work is needed to embed findings in policy and practice. Study registration: Ethical approval from the University of Birmingham Research Ethics Committee (ERN_13-1085AP41, ERN_21-0541 and ERN_21-0541A). Funding: This project was funded by the National Institute of Health and Care Research (NIHR) Health Services and Delivery Research programme (HSDR 16/138/31 - Birmingham, RAND and Cambridge Evaluation Centre).


Social care is facing pressures due to a lack of funding and staff and COVID-19. One way to ease pressures is by using digital technology. We looked at a technology that places sensors around people's homes to monitor changes in daily activity, including how this technology was brought into social care and how it works. We reviewed evidence and spoke with experts (including people who draw on care and support) to finalise the study design. We then interviewed people from social care organisations, carers, technology developers and regulators. • Organisations expected the technology to do a lot, including preventing illness, assessing needs, supporting independent living, reassuring people drawing on care (and their carers) and saving money. • Some social care decision-makers may not have the skills and understanding needed to make decisions about the use of new technology, and lacked a strategic approach to decision-making. • It was difficult to collect the data needed to use the sensors correctly, which meant the technology did not meet expectations. • Care staff were trained on how to use the sensors, although many struggled to make sense of the data they collected. • Social care is often focused on dealing with a crisis, rather than preventing one. This means a culture change is needed to use the sensors properly.


Our research confirmed challenges in using new technology in social care. We also found new problems, such as dealing with large amounts of health data, asking care staff to use this information without enough training, and introducing a technology focused on prevention into an environment which is focused on dealing with crises. Our findings have helped to fill gaps in knowledge and will let us share practical learning with those introducing new technology in social care.


Asunto(s)
Inteligencia Artificial , COVID-19 , Humanos , Adulto , Inglaterra , Apoyo Social , Tecnología
8.
J Health Serv Res Policy ; 28(3): 171-180, 2023 07.
Artículo en Inglés | MEDLINE | ID: mdl-37366220

RESUMEN

OBJECTIVES: Remote home monitoring services for patients at risk of rapid deterioration introduced during the COVID-19 pandemic had important implications for the health workforce. This study explored the nature of 'work' that health care staff in England undertook to manage patients with COVID-19 remotely, how they were supported to deliver these new services, and the factors that influenced delivery of COVID-19 remote home monitoring services for staff. METHODS: We conducted a rapid mixed-methods evaluation of COVID-19 remote home monitoring services during November 2020 to July 2021 using a cross-sectional survey of a purposive sample of staff involved in delivering the service (clinical leads, frontline delivery staff and those involved in data collection and management) from 28 sites across England. We also conducted interviews with 58 staff in a subsample of 17 sites. Data collection and analysis were carried out in parallel. We used thematic analysis to analyse qualitative data while quantitative survey data were analysed using descriptive statistics. RESULTS: A total of 292 staff responded to the surveys (39% response rate). We found that prior experience of remote monitoring had some, albeit limited benefit for delivering similar services for patients diagnosed with COVID-19. Staff received a range of locally specific training and clinical oversight along with bespoke materials and resources. Staff reported feeling uncertain about using their own judgement and being reliant on seeking clinical oversight. The experience of transitioning from face-to-face to remote service delivery led some frontline delivery staff to reconsider their professional role, as well as their beliefs around their own capabilities. There was a general perception of staff being able to adapt, acquire new skills and knowledge and they demonstrated a commitment to continuity of care for patients, although there were reports of struggling with the increased accountability and responsibility attached to their adapted roles at times. CONCLUSIONS: Remote home monitoring models can play an important role in managing a large number of patients for COVID-19 and possibly a range of other conditions. Successful delivery of such service models depends on staff competency and the nature of training received to facilitate effective care and patient engagement.


Asunto(s)
COVID-19 , Humanos , COVID-19/epidemiología , Pandemias , Estudios Transversales , Atención a la Salud , Inglaterra
9.
Diabet Med ; 40(10): e15131, 2023 10.
Artículo en Inglés | MEDLINE | ID: mdl-37151184

RESUMEN

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.


Asunto(s)
Vacunas contra el Cáncer , Diabetes Mellitus Tipo 1 , Cetoacidosis Diabética , Humanos , Niño , Diabetes Mellitus Tipo 1/diagnóstico , Diabetes Mellitus Tipo 1/epidemiología , Inmunoterapia , Reino Unido/epidemiología , Investigación Cualitativa
10.
Orphanet J Rare Dis ; 18(1): 86, 2023 04 17.
Artículo en Inglés | MEDLINE | ID: mdl-37069697

RESUMEN

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.


Asunto(s)
Trastornos de Ansiedad , Atención a la Salud , Humanos , Ansiedad
11.
Front Sociol ; 8: 982946, 2023.
Artículo en Inglés | MEDLINE | ID: mdl-36860913

RESUMEN

Introduction: Rapid evaluations can offer evidence on innovations in health and social care that can be used to inform fast-moving policy and practise, and support their scale-up according to previous research. However, there are few comprehensive accounts of how to plan and conduct large-scale rapid evaluations, ensure scientific rigour, and achieve stakeholder engagement within compressed timeframes. Methods: Using a case study of a national mixed-methods rapid evaluation of COVID-19 remote home monitoring services in England, conducted during the COVID-19 pandemic, this manuscript examines the process of conducting a large-scale rapid evaluation from design to dissemination and impact, and reflects on the key lessons for conducting future large-scale rapid evaluations. In this manuscript, we describe each stage of the rapid evaluation: convening the team (study team and external collaborators), design and planning (scoping, designing protocols, study set up), data collection and analysis, and dissemination. Results: We reflect on why certain decisions were made and highlight facilitators and challenges. The manuscript concludes with 12 key lessons for conducting large-scale mixed-methods rapid evaluations of healthcare services. We propose that rapid study teams need to: (1) find ways of quickly building trust with external stakeholders, including evidence-users; (2) consider the needs of the rapid evaluation and resources needed; (3) use scoping to ensure the study is highly focused; (4) carefully consider what cannot be completed within a designated timeframe; (5) use structured processes to ensure consistency and rigour; (6) be flexible and responsive to changing needs and circumstances; (7) consider the risks associated with new data collection approaches of quantitative data (and their usability); (8) consider whether it is possible to use aggregated quantitative data, and what that would mean when presenting results, (9) consider using structured processes & layered analysis approaches to rapidly synthesise qualitative findings, (10) consider the balance between speed and the size and skills of the team, (11) ensure all team members know roles and responsibilities and can communicate quickly and clearly; and (12) consider how best to share findings, in discussion with evidence-users, for rapid understanding and use. Conclusion: These 12 lessons can be used to inform the development and conduct of future rapid evaluations in a range of contexts and settings.

12.
Diabet Med ; 40(4): e15035, 2023 04.
Artículo en Inglés | MEDLINE | ID: mdl-36576331

RESUMEN

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.


Asunto(s)
Diabetes Mellitus , Automanejo , Humanos , Niño , Adolescente , Calidad de Vida , Revisiones Sistemáticas como Asunto , Teléfono
13.
BMC Prim Care ; 23(1): 230, 2022 09 09.
Artículo en Inglés | MEDLINE | ID: mdl-36085008

RESUMEN

INTRODUCTION: The significance of the role of receptionists during the recent shift to remote triage has been widely recognised and they will have a significant role to play in UK general practice as it continues to cope with a huge increase in demand exacerbated by the COVID-19 pandemic. To maximise their contribution, it is important the social and occupational characteristics of the modern receptionist are understood, alongside their attitudes towards the role and their perceptions of the support and training they receive . METHODS: We used convenience and cross-sectional sampling to survey the demographic characteristics of receptionists and various aspects of their role and responsibilities. This included the training received, specific tasks performed, job satisfaction, the importance of the role, and their interaction with clinical and non-clinical colleagues. We also captured data on the characteristics of their practice including the number of GPs and location. RESULTS: A total of 70 participants completed the survey (16 postal and 54 online responses) of whom the majority were white (97.2%), female (98.6%), and aged 40 and over (56.7%). The majority of the training focussed on customer service (72.9%), telephone (64.3%), and medical administration skills (58.6%). Just over a quarter had received training in basic triage (25.7%). A standard multiple regression model revealed that the strongest predictor of satisfaction was support from practice GPs (ß = .65, p <.001) there were also significant positive correlations between satisfaction and appreciation from GPs, r(68) = .609, p < .001. CONCLUSION: This study has provided a much-needed update on the demographics, duties, and job satisfaction of GP receptionists. The need for diversification of the workforce to reflect the range of primary care patients warrants consideration in light of continuing variation in access along lines of gender andethnicity. Training continues to focus on administrative duties not on the clinically relevant aspects of their role such as triage.


Asunto(s)
COVID-19 , Medicina General , Adulto , COVID-19/epidemiología , Estudios Transversales , Femenino , Humanos , Persona de Mediana Edad , Pandemias , Encuestas y Cuestionarios , Recursos Humanos
14.
Health Expect ; 25(5): 2386-2404, 2022 10.
Artículo en Inglés | MEDLINE | ID: mdl-35796686

RESUMEN

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.


Asunto(s)
COVID-19 , Atención al Paciente , Participación del Paciente , Telemedicina , Humanos , Cuidadores , Estudios Transversales , Pandemias
15.
Health Policy ; 126(8): 777-785, 2022 08.
Artículo en Inglés | MEDLINE | ID: mdl-35637053

RESUMEN

INTRODUCTION: The multi-disciplinary care offered to patients with multi-morbidities offers a powerful example of the practical challenges faced by the National Health Service's planned move to more closely integrated models of care. PURPOSE, OBJECTIVE, AND CONTRIBUTIONS: The intention of this work was to identify the opportunities and obstacles presented by the current provision of integrated care and explore their implications for existing and future policy initiatives. MATERIALS AND METHODS: We conducted a qualitative exploration of the experiences of senior managers, commissioners and clinicians, using a post-hoc content analysis to populate and present the results within the multi-componential Sustainable integrated chronic care model for multi-morbidity: delivery, financing, and performance (SELFIE) framework designed to understand integrated care. RESULTS: A total of 13 senior medical directors, commissioners, and managers, and 15 clinicians from a range of care settings were interviewed. Relative factors within the six framework components were identified namely; issues around communication between settings (Service delivery), the importance of collaborative leadership (Leadership & governance); the need for high-level collaboration (Workforce), better directed financial incentives (Financing), the lack of software interoperability (Technologies and medical products) and constraints on sharing and utilising patient data (Information & Research). CONCLUSIONS: The SELFIE framework has provided valuable insight into the challenges presented by inter-organisational and inter-professional working that will help guide the design and implementation of policies promoting integrated care. These may be mitigated by sharing the varied experiences and priorities that exist across primary and care settings, alongside improving communication and supporting collaborative leadership. There also appears a clear role for refocussing financial incentives to reward shared responsibility at all levels of service delivery.


Asunto(s)
Prestación Integrada de Atención de Salud , Medicina Estatal , Humanos , Liderazgo , Morbilidad , Reino Unido
16.
Artículo en Inglés | MEDLINE | ID: mdl-35450871

RESUMEN

OBJECTIVE: Type 1 diabetes (T1D) is the most common form of diabetes in children, accounting for 96% of cases, with 29 000 children affected in the UK. Studies have recently identified immunotherapies that safely delay the development of T1D for at least 3 years, and further therapies are in development. General population screening programs in other countries can now accurately identify children with presymptomatic T1D who can be entered into prevention studies. The UK does not have such a system in place. We aim to explore whether parents and children in the UK would want to be part of such a program of testing for T1D in the general population, how they would want to be informed and participate in such a program, and how any barriers to recruitment and participation can be addressed. Additionally, the views of stakeholders who would be involved in the testing program will be collected and analyzed. RESEARCH DESIGN AND METHODS: We will interview parents/guardians and children aged 3-13 years about their views on screening for T1D. We will recruit purposefully to ensure representation across ethnicities and socioeconomic groups. Interviews will be transcribed, analyzed and used to inform iterative co-design work with additional families to address any issues raised. Similar qualitative work will be undertaken with professional stakeholders who would be involved in implementing any future screening program. Where possible, all aspects of this study will be performed remotely by phone or online to minimize infection risk. CONCLUSIONS: This qualitative study will provide the first insights into acceptability of testing and monitoring for T1D in the general population from the perspective of families and stakeholders in the UK. Co-design work will help establish the barriers and identify strategies to mitigate and overcome these issues, as an important step towards consideration of national testing for T1D.


Asunto(s)
Diabetes Mellitus Tipo 1 , Niño , Diabetes Mellitus Tipo 1/diagnóstico , Diabetes Mellitus Tipo 1/epidemiología , Diabetes Mellitus Tipo 1/terapia , Humanos , Investigación Cualitativa , Reino Unido/epidemiología
17.
EClinicalMedicine ; 45: 101318, 2022 Mar.
Artículo en Inglés | MEDLINE | ID: mdl-35252824

RESUMEN

BACKGROUND: Remote home monitoring of people testing positive for COVID-19 using pulse oximetry was implemented across England during the Winter of 2020/21 to identify falling blood oxygen saturation levels at an early stage. This was hypothesised to enable earlier hospital admission, reduce the need for intensive care and improve survival. This study is an evaluation of the clinical effectiveness of the pre-hospital monitoring programme, COVID oximetry @home (CO@h). METHODS: The setting was all Clinical Commissioning Group (CCG) areas in England where there were complete data on the number of people enrolled onto the programme between 2nd November 2020 and 21st February 2021. We analysed relationships at a geographical area level between the extent to which people aged 65 or over were enrolled onto the programme and outcomes over the period between November 2020 to February 2021. FINDINGS: For every 10% increase in coverage of the programme, mortality was reduced by 2% (95% confidence interval:4% reduction to 1% increase), admissions increased by 3% (-1% to 7%), in-hospital mortality fell by 3% (-8% to 3%) and lengths of stay increased by 1·8% (-1·2% to 4·9%). None of these results are statistically significant, although the confidence interval indicates that any adverse effect on mortality would be small, but a mortality reduction of up to 4% may have resulted from the programme. INTERPRETATION: There are several possible explanations for our findings. One is that CO@h did not have the hypothesised impact. Another is that the low rates of enrolment and incomplete data in many areas reduced the chances of detecting any impact that may have existed. Also, CO@h has been implemented in many different ways across the country and these may have had varying levels of effect. FUNDING: This is independent research funded by the National Institute for Health Research, Health Services & Delivery Research programme (RSET Project no. 16/138/17; BRACE Project no. 16/138/31) and NHSEI. NJF is an NIHR Senior Investigator.

18.
Comput Biol Med ; 144: 105381, 2022 05.
Artículo en Inglés | MEDLINE | ID: mdl-35279424

RESUMEN

BACKGROUND: The number of people in the UK with two or more conditions continues to grow and their clinical management is complicated by the reliance on guidance focused on a single condition. This leaves individual clinicians responsible for collating disparate information from patient management systems and care recommendations to manually manage the contradictions that exist in the simultaneous treatment of various conditions. METHODS/DESIGN: We have devised a modelling language based on BPMN that allows us to create computer interpretable representations of single condition guidance and incorporate patient data to detect the points of conflict between multiple conditions based on their transformation to logical constraints. This has been used to develop a prototype clinical decision support tool that we can use to highlight the causes of conflict between them in three main areas: medication, lifestyle and well-being, and appointment bookings. RESULTS: The prototype tool was used to discern contradictions in the care recommendations of chronic obstructive pulmonary disease and osteoarthritis. These were presented to a panel of clinicians who confirmed that the tool produced clinically relevant alerts that can advise clinicians of the presence of conflicts between guidelines relating to both clashes in medication or lifestyle advice. CONCLUSIONS: The need for supporting general practitioners in their treatment of patients remains and this proof of concept has demonstrated that by converting this guidance into computer-interpretable pathways we can use constraint solvers to readily identify clinically relevant points of conflict between critical elements of the pathway.


Asunto(s)
Sistemas de Apoyo a Decisiones Clínicas , Enfermedad Pulmonar Obstructiva Crónica , Humanos , Morbilidad , Negociación
19.
Rheumatol Adv Pract ; 5(3): rkab075, 2021.
Artículo en Inglés | MEDLINE | ID: mdl-34778700

RESUMEN

OBJECTIVE: Improvements in care have led to the recognition of ANCA-associated vasculitis (AAV) as a chronic condition; however, the self-management strategies considered a crucial component of the care model for patients with more prevalent chronic conditions are yet to be integrated formally into the treatment of AAV patients. The aim of the work we present here is to identify those self-management processes and tasks already being adopted by patients with AAV to help inform existing care and the development of a structured self-management programme. METHODS: We conducted a series of focus groups and semi-structured interviews with AAV patients, collating the data and performing a post hoc deductive analysis based on a consolidated framework of self-management processes. RESULTS: Despite the unique attributes and demands of AAV, patients adopted self-management behaviours previously identified and supported in patients with more prevalent chronic diseases. They accessed information on their disease proactively and learnt to mitigate their symptoms and side-effects. They pursued a range of health-promotion activities and accessed support from their social network and beyond and, ultimately, learnt to integrate the condition into their everyday life. CONCLUSION: Our work has highlighted some key areas of self-management that might be addressed usefully and immediately, including the provision of more consistent information relating to evolving symptoms and side-effects, additional support in accessing both appropriate care and community-based resources, and the use of interventions to bolster resilience. Our findings will inform the development of a tailored self-management programme, but in the meantime provide a more contemporary context for current clinician-patient conversations.

20.
BMJ Open ; 11(10): e053440, 2021 10 12.
Artículo en Inglés | MEDLINE | ID: mdl-34642200

RESUMEN

OBJECTIVE: The increased reliance on digital technologies to deliver healthcare as a result of the COVID-19 pandemic has meant pre-existing disparities in digital access and utilisation of healthcare might be exacerbated in disadvantaged patient populations. The aim of this rapid review was to identify how this 'digital divide' was manifest during the first wave of the pandemic and highlight any areas which might be usefully addressed for the remainder of the pandemic and beyond. DESIGN: Rapid review and narrative synthesis. DATA SOURCES: The major medical databases including PubMed and Embase and Google Scholar were searched alongside a hand search of bibliographies. ELIGIBILITY CRITERIA: Original research papers available in English which described studies conducted during wave 1 of the COVID pandemic and reported between 1 March 2020 and 31 July 2021. RESULTS: The search was described using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses and identified nine studies. The results are presented within a refined framework describing the three key domains of the digital divide: (1) digital access, within which one study described continuing issues with internet connectivity among vulnerable patients in the UK; (2) digital literacy, where seven studies described how ethnic minorities and the elderly were less likely to use digital technologies in accessing care; (3) digital assimilation, where one study described how video technologies can reduce feelings of isolation and another how elderly black males were the most likely group to share information about COVID-19 on social media platforms. CONCLUSIONS: During the early phase of the pandemic in the developed world, familiar difficulties in utilisation of digital healthcare among the elderly and ethnic minorities continued to be observed. This is a further reminder that the digital divide is a persistent challenge that needs to be urgently addressed when considering the likelihood that in many instances these digital technologies are likely to remain at the centre of healthcare delivery.


Asunto(s)
COVID-19 , Brecha Digital , Anciano , Atención a la Salud , Humanos , Masculino , Pandemias , SARS-CoV-2
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