Can paramedics use FRAX (the WHO Fracture Risk Assessment Tool) to help GPs improve future fracture risk in patients who fall? Protocol for a randomised controlled feasibility study

© 2014, BMJ Publishing Group. All rights reserved. Introduction: Currently identification, and therefore, management of patients at risk of osteoporotic fracture in the UK is suboptimal. As the majority of patients who fracture have fallen, it follows that people who fall can usefully be targeted in any programme that aims to reduce osteoporotic fracture. Targeting vulnerable patients who are likely to benefit from intervention may help shift the management of fracture prevention into primary care, away from emergency departments. Paramedics who attend to patients who have fallen may be well placed to assess future fracture risk, using the Fracture Risk Assessment Tool (FRAX) and communicate that information directly to general practitioners (GPs). Methods and analysis: This feasibility study takes the form of a pragmatic, randomised controlled trial aimed at exploring and refining issues of study design, recruitment, retention, sample size and acceptability preceding a large-scale study with fracture as the end point. Patients (aged >50) who fall, call an ambulance, are attended by a study paramedic and give verbal consent will be asked FRAX and fall questions. Patients who subsequently formally consent to participation will be randomised to control (usual care) or intervention groups. Intervention will constitute transmission of calculated future fracture risk to the patients' GP with suitable, evidence-based recommendations for investigation or treatment. 3 months after the index fall, data ( proportion of patients in each group undergoing investigation or starting new treatment, quality of life and health economic) will be collected and analysed using descriptive statistics. A nested qualitative study will explore issues of acceptability and study design with patients, paramedics and GPs. Ethics and dissemination: This protocol was approved by NRES Committee South Central Oxford C in October 2012. Research Ethics Committee ref.12/SC/0604. The study findings will be disseminated through peer-reviewed journals, conference presentations and local public events. A publication plan and authorship criteria have been preagreed. Trial registration number: ISRCTN: 36245726

A checklist for managed access programmes for reimbursement co-designed by Canadian patients and caregivers

Introduction: Reimbursement decisions on orphan drugs carry significant uncertainty, and as the amount increases, so does the risk of making a wrong decision, where harms outweigh benefits. Consequently, patients often face limited access to orphan drugs. Managed access programmes (MAPs) are a mechanism for managing risk while enabling access to potentially beneficial drugs. Patients and their caregivers have expressed support for these programmes and see patient input as critical to successful implementation. However, they have yet to be systematically involved in their design. Objective: The aim of this study was to co-design with patients and caregivers a tool for the development of managed access programmes. Methods: Building upon established relationships with the Canadian Organization for Rare Disorders, the project team collaborated with patients and caregivers using the principles of participatory action research. Data were collected at two workshops and analysed using a thematic network approach. Results: Patients and caregivers co-designed a checklist comprised of six aspects of an ideal MAP relating to accountability (programme goals); governance (MAP-specific committee oversight, patient input, international collaboration); and evidence collection (outcome measures and continuation criteria, on-going monitoring and registries). They recognized that health-care resources are finite and considered disease or drug eligibility criteria for deciding when to use a MAP (eg drugs treating diseases for which there are no other legitimate alternatives). Conclusions: A patient and caregiver-designed checklist was created, which emphasized patient involvement and transparency. Further research is needed to examine the feasibility of this checklist and roles for other stakeholders

A questionnaire-based survey on the uptake and use of cattle vaccines in the UK

Background: Vaccination is a widely used strategy for disease control in cattle in the UK and abroad. However, there has been limited research describing the uptake and use of cattle vaccines on UK farms. Aim: To describe the current uptake and usage of cattle vaccines in the UK. Design: A questionnaire, available in paper and online format, was distributed to cattle farmers by convenience sampling. Participants: All UK cattle farmers were eligible to participate in the study. Results: Eighty-six per cent of respondents (n=229/266) had vaccinated their cattle in the past year. Diseases most commonly vaccinated against were Bovine Viral Diarrhoea, Leptospirosis and Infectious Bovine Rhinotracheitis. Vaccination compliance was limited in certain areas, for example only 48 per cent of respondents stated that they administered the second dose in the primary course within the recommended timeframe, and 14 per cent of respondents stated that they vaccinated earlier than the youngest recommended age. Although outside the scope of this study, further work is needed to establish the extent of inadequate compliance and the effect this has on vaccine efficacy. The role of the veterinarian was highlighted as the main supplier of vaccines and preferred source of vaccination information. Respondents preferred to receive recommendations regarding vaccination by face-to-face communication with the veterinarian. Conclusions: The results provide a description of the current uptake and usage of cattle vaccines in the UK. Uptake is generally high but there are areas of usage of vaccines which could be improved upon. The veterinarian plays a key role as supplier of vaccines and a source of information for the majority of farmers. Although outside the scope of this study, further work is needed to establish the extent of inadequate compliance and the effect this has on vaccine efficacy. Although the respondents in this study represent a biased population of farmers, the findings indicate areas for future investigation in order to improve vaccination strategies in cattle in the UK

Mothers’ perceptions of family centred care in neonatal intensive care units

Objective To explore mothers’ perceptions of family centred care (FCC) in neonatal intensive care units (NICUs) in England. Design The qualitative experiences of 12 mothers from three NICUs in the UK were elicited using individual interviews. A thematic network analysis was conducted on the transcribed interviews Main outcome measures A central global theme supported by a number of organizing themes were developed reflecting the views of the mothers and their experiences of FCC. Results A global theme of “Finding My Place” was identified, supported by six organizing themes: Mothering in Limbo; Deference to the Experts; Anxious Surveillance; Muted Relations, Power Struggles and Consistently Inconsistent. Mothers experienced a state of liminality and were acutely sensitive to power struggles, awkward relationships and inconsistencies in care. To try to maintain their equilibrium and protect their baby they formed deferential relationships with health professionals and remained in a state of anxious surveillance. Conclusions This study illustrates that despite the rhetoric around the practice of FCC in NICUs, there was little in the mother's narratives to support this. It is of the utmost importance to minimize the consequences of the liminal experience, to improve staff–mother interactions and to facilitate mothers’ opportunities to be primary caregivers

Empty rituals? A qualitative study of users’ experience of monitoring & evaluation systems in HIV interventions in western India

In global health initiatives, particularly in the context of private philanthropy and its ‘business minded’ approach, detailed programme data plays an increasing role in informing assessments, improvements, evaluations, and ultimately continuation or discontinuation of funds for individual programmes. The HIV/AIDS literature predominantly treats monitoring as unproblematic. However, the social science of audit and indicators emphasises the constitutive power of indicators, noting that their effects at a grassroots level are often at odds with the goals specified in policy. This paper investigates users' experiences of Monitoring and Evaluation (M&E) systems in the context of HIV interventions in western India. Six focus groups (totalling 51 participants) were held with employees of 6 different NGOs working for government or philanthropy-funded HIV interventions for sex workers in western India. Ten donor employees were interviewed. Thematic analysis was conducted. NGO employees described a major gap between what they considered their “real work” and the indicators used to monitor it. They could explain the official purposes of M&E systems in terms of programme improvement and financial accountability. More cynically, they valued M&E experience on their CVs and the rhetorical role of data in demonstrating their achievements. They believed that inappropriate and unethical means were being used to meet targets, including incentives and coercion, and criticised indicators for being misleading and inflexible. Donor employees valued the role of M&E in programme improvement, financial accountability, and professionalising NGO-donor relationships. However, they were suspicious that NGOs might be falsifying data, criticised the insensitivity of indicators, and complained that data were under-used. For its users, M& E appears an ‘empty ritual’, enacted because donors require it, but not put to local use. In this context, monitoring is constituted as an instrument of performance management rather than as a means of rational programme improvement

Student perceptions of a healthy university

As complex environments within which individuals and populations operate, universities present important contexts for understanding and addressing health issues. The healthy university is an example of the settings approach, which adopts a whole system perspective, aiming to make places within which people, learn, live, work and play supportive to health and wellbeing. The UK Healthy Universities Network has formulated an online toolkit, which includes a self-review tool, intended to enable universities to assess what actions they need to take to develop as a healthy university. This paper presents findings from consultative research undertaken with students from universities in England, Scotland and Wales, which explored what they believe represents a healthy university. Methods Student surveys and focus groups were used to collect data across eleven universities in England, Scotland and Wales. A priori themes were used to develop our own model for a healthy university, and for the thematic coding phase of analysis. Findings A healthy university would promote student health and wellbeing in every aspect of its business from its facilities and environment through to its curriculum. Access to reasonably priced healthy food and exercise facilities were key features of a healthy university for students in this study. The Self Review Tool has provided a crucial start for universities undertaking the journey towards becoming a healthy university. In looking to the future both universities and the UK Healthy Universities Network will now need to look at what students want from their whole university experience, and consider how the Self Review Tool can help universities embrace a more explicit conceptual framework. Conclusion The concept of a healthy university that can tailor its facilities and supportive environments to the needs of its students will go some way to developing students who are active global citizens and who are more likely to value and prioritise health and wellbeing, in the short and long term through to their adult lives

New mothers’ experiences of the urban environment with their preterm infants involve complex social, emotional and psychological processes

Aim Studies have explored how mothers and premature babies make the transition from a neonatal unit (NNU) to home, but little is known about how mothers cope with urban life with a vulnerable baby. This controlled trial investigated how first-time mothers with singleton preterm babies handled that experience in the first few months after discharge from a NNU, compared to the first-time mothers of healthy, singleton term-born infants. Methods This parent-led, qualitative study was carried out in London, UK, from 2013 to 2015 and used diaries and walking interviews with researchers. Thematic network analysis was performed to provide insights into the experiences of these 19 mothers. Results The two groups had similar experiences and needs in the urban environment, and these common experiences of city life shaped their new identities as mothers. However, the mothers of preterm babies had difficulties developing supportive relationships and seeking affirming social environments. Conclusion This study highlights what the mothers of preterm babies experienced in the first few months after their infant was discharged from hospital. It stresses the need to understand the complexity of the mothers’ social, emotional and psychological processes when they make the transition from home to visit the city with a vulnerable baby