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.

"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.

The role of self-management in burns aftercare: a qualitative research study.

INTRODUCTION: For severe burns patient care presents a considerable challenge, necessitating an integrated multi-disciplinary approach that utilises a range of treatments. The period of care post-discharge can be lengthy and complex, and include scar management, occupational and physiotherapies, psychological support, and further surgery. How successfully the patient negotiates this complex care regimen is critical to their long-term recovery and in doing so they would appear to employ approaches recognised as "self-management" in other chronic conditions. However their exact nature and how they are used has yet to be explicitly explored amongst chronic burn patients. METHODS: Semi-structured interviews were conducted with 24 patients to discuss their experiences of long-term burn treatment as part of a broader mixed- methods feasibility study of the use of pressure garment therapy in preventing hypertrophic scarring after burn injury. The topic guide included questions on the patient experience of their care post discharge, including pressure garment therapy and other scar management techniques; and their expectations and experiences of treatment and recovery. The data were analysed using an established framework of self-management processes. RESULTS: Burns patients employ many of the same processes of self-management as those experiencing more widely recognised chronic diseases or illnesses. This is despite the prospect of gradual improvement amongst burns patients absent in those with incurable chronic conditions. The key processes of self-management they share are the ability to focus on their illness needs, activate the appropriate resources and coming to terms with the consequences of living with either the physical or psychological consequences of their condition. CONCLUSION: Modern burn care is technologically advanced and delivered by a highly trained, multi-disciplinary team, yet the level of its success relies on the ability of the patient to independently fulfil a number of health-related tasks and activities once leaving hospital. Considering the potential cost-savings to health services and the prospect of improved outcomes for patients capable of self-management our work is an important first step in more precisely understanding the use of self-management amongst burns patients, and the level of implicit or explicit support currently offered by their care providers.

Assessing the extent of drug interactions among patients with multimorbidity in primary and secondary care in the West Midlands (UK): a study protocol for the Mixed Methods Multimorbidity Study (MiMMS).

INTRODUCTION: The numbers of patients with three or more chronic conditions (multimorbidity) are increasing, and will rise to 2.9 million by 2018 in the UK alone. Currently in the UK, conditions are mainly managed using over 250 sets of single-condition guidance, which has the potential to generate conflicting recommendations for lifestyle and concurrent medication for individual patients with more than one condition. To address some of these issues, we are developing a new computer-based tool to help manage these patients more effectively. For this tool to be applicable and relevant to current practice, we must first better understand how existing patients with multimorbidity are being managed, particularly relating to concerns over prescribing and potential polypharmacy. METHODS AND ANALYSIS: Up to four secondary care centres, two community pharmacies and between four and eight primary care centres in the West Midlands will be recruited. Interviewees will be purposively sampled from these sites, up to a maximum of 30. In this mixed methods study, we will perform a dual framework analysis on the qualitative data; the first analysis will use the Theoretical Domains Framework to assess barriers and enablers for healthcare professionals around the management of multimorbid patients; the second analysis will use Normalisation Process Theory to understand how interventions are currently being successfully implemented in both settings. We will also extract quantitative anonymised patient data from primary care to determine the extent of polypharmacy currently present for patients with multimorbidity in the West Midlands. DISCUSSION: We aim to combine these data so that we can build a useful, fully implementable tool which addresses the barriers most amenable to change within both primary and secondary care contexts. ETHICS AND DISSEMINATION: Favourable ethical approval has been granted by The University of Birmingham Research Ethics Committee (ERN_16-0074) on 17 May 2016. Our work will be disseminated through peer-reviewed literature, trade journals and conferences. We will also use the dedicated web page hosted by the University to serve as a central point of contact and as a repository of our findings. We aim to produce a minimum of three articles from this work to contribute to the international scientific literature. PROTOCOL REGISTRATION NUMBER: NIHR Clinical Research Network Portfolio Registration CPMS ID 30613.

Radiofrequency Exposure Amongst Employees of Mobile Network Operators and Broadcasters.

Little is known about personal exposure to radiofrequency (RF) fields amongst employees in the telecommunications industry responsible for installing and maintaining transmitters. IARC classified RF exposure as a possible carcinogen, although evidence from occupational studies was judged to be inadequate. Hence, there is a need for improved evidence of any potentially adverse health effects amongst the workforce occupationally exposed to RF radiation. In this study, results are presented from an exposure survey using data from personal monitors used by employees in the broadcasting and telecommunication industries of the UK. These data were supplemented by spot measurements using broadband survey metres and information on daily work activities provided by employee questionnaires. The sets of real-time personal data were categorised by four types of site determined by the highest powered antenna present (high, medium or low power and ground-level sites). For measurements gathered at each type of site, the root mean square and a series of box plots were produced. Results from the daily activities diaries suggested that riggers working for radio and television broadcasters were exposed to much longer periods as compared to colleagues working for mobile operators. Combining the results from the measurements and daily activity diaries clearly demonstrate that exposures were highest for riggers working for broadcasting sites. This study demonstrates that it is feasible to carry out exposure surveys within these populations that will provide reliable estimates of exposure that can be used for epidemiological studies of occupational groups exposed to RF fields.

Protocol for using mixed methods and process improvement methodologies to explore primary care receptionist work.

INTRODUCTION: The need to cope with an increasingly ageing and multimorbid population has seen a shift towards preventive health and effective management of chronic disease. This places general practice at the forefront of health service provision with an increased demand that impacts on all members of the practice team. As these pressures grow, systems become more complex and tasks delegated across a broader range of staff groups. These include receptionists who play an essential role in the successful functioning of the surgery and are a major influence on patient satisfaction. However, they do so without formal recognition of the clinical implications of their work or with any requirements for training and qualifications. METHODS AND ANALYSIS: Our work consists of three phases. The first will survey receptionists using the validated Work Design Questionnaire to help us understand more precisely the parameters of their role; the second involves the use of iterative focus groups to help define the systems and processes within which they work. The third and final phase will produce recommendations to increase the efficiency and safety of the key practice processes involving receptionists and identify the areas and where receptionists require targeted support. In doing so, we aim to increase job satisfaction of receptionists, improve practice efficiency and produce better outcomes for patients. ETHICS AND DISSEMINATION: Our work will be disseminated using conferences, workshops, trade journals, electronic media and through a series of publications in the peer reviewed literature. At the very least, our work will serve to prompt discussion on the clinical role of receptionists and assess the advantages of using value streams in conjunction with related tools for process improvement.