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Pain is recognised as a subjective phenomenon, often defined as ‘whatever the experiencing person says it is, existing whenever the experiencing person says it does’. Pain is a critical aspect of life for many people with haemophilia (PWH) but is under-recognised and inconsistently managed by clinicians. As haemophilia management moves towards non-factor-based treatments which may normalise life experience, it is unclear how this will impact on the experience and management of pain.

Management of haemophilia A requires administration of factor VIII therapy which, for those with severe haemophilia A in the UK, is predominantly self-administered at home in a prophylactic regimen to prevent or minimise bleeding. The UK undertakes a national tendering process every three years to ensure access to current and new therapies at a cost-effective price, through contracting for large volumes from individual suppliers. This means that some products may no longer be available and that new products can enter the UK market at any tendering stage.

Haemophilia nurses in the UK are instrumental in supporting people with haemophilia in self-management, including managing treatment options, recording treatment use and understanding the budgetary impact of prescribing practice. The widespread use of prophylaxis identified haemophilia as a high cost disorder to treat, resulting in a financially successful national tendering process with increased scrutiny of clotting factor use at both individual and haemophilia treatment centre level. The UK tenders, undertaken at a national level every three years, have ensured access to current and new therapies at the most cost-effective price through economies of scale in committing to purchase large volumes from suppliers.

The air quality in classrooms significantly impacts school children's health and learning performance. It has been reported worldwide that classroom air quality does not meet the required standard and actions are pledged for improvement. However, it poses a challenge for decision-making in terms of prioritising taking-up measures. The aim of this study is to propose a method of identifying the action measures for improving classroom air quality and prioritising them. Case studies in the UK and China were conducted, and the key measures were identified through literature studies, open-ended questionnaire surveys, and workshop discussions, which are classified into three categories: B1, policy; B2, technology; and B3, information sharing. The analytical hierarchy process (AHP) is applied in the prioritisation of the action measures. A total of 138 teachers and parents from China and the UK participated in this case study. The genetic algorithm-optimised Hadamard product (GAOHP) method is applied to justify the consistency ratio (CR) within the required threshold value in order to ensure the consistency of the subjective perception and the accuracy of comparative weights. The results show that item B2, technology, is the most desired measure by both Chinese and British parents and teachers, despite the deviation from the optimal choice in China and the UK. Among the proposed action measures, the UK respondents strongly expected air purifiers with natural ventilation as opposed to their Chinese counterparts preferring to share the real-time status of classroom air quality. Our work will provide strong support for the subsequent selection of indoor air quality improvement strategies for schools. [ABSTRACT FROM AUTHOR]

Introduction: Joint bleeds in haemophilia cause destruction of articular structures, impaired function and pain. Up to 70% of people with haemophilia (PWH) report chronic pain. Little is known about the pain experiences in PWH in the UK. Aim: To identify prevalence and perceptions of pain among PWH living in the UK. Methods: A cross‐sectional, non‐interventional survey study conducted among PWH (all severities). The survey incorporated elements from validated tools (EQ‐5D; EQ‐VAS) and was distributed via participating treatment centres. Results: Five hundred and ninety‐nine PWH responded, 91% aged > 18. 81% used factor prophylactically or on demand. More pain was reported by those treated on demand versus prophylaxis particularly in those who reported daily pain. 65% reported 'problem joints' based on individual impact rather than medically defined 'target joints', 2/3 reported multiple joint issues. The ankle was most commonly affected. 59% reported frequent pain, with 56% aware of pain constantly or most of the time and were more likely to report less favourable EQ‐5D or EQ‐VAS scores (p <.001). Pain frequency/awareness was consistent across all severities. Most discussed pain with care teams, 31% only when asked; 25% did not discuss it. Pain discussions resulted in physiotherapy referral (63%) analgesia prescription (48%), and a minority specialist pain referral (9%). Most felt well supported with regard to their pain, but 70% reported learning to live with it. Conclusion: Pain affects PWH of all ages and severities even in a well‐resourced country significantly impacting quality of life. Clinicians must be more aware of chronic pain in PWH. Biopsychosocial approaches to pain assessment and management are recommended. [ABSTRACT FROM AUTHOR]

Integrated assessment modelling (IAM) has been successfully used in the development of international agreements to reduce transboundary pollution in Europe, based on the GAINS model of IIASA. At a national level in the UK, a similar approach has been taken with the UK Integrated Assessment Model, UKIAM, superimposing pollution abatement measures and behavioural change on energy projections designed to meet targets set for the reduction of greenhouse gas emissions and allowing for natural and imported contributions from other countries and shipping. This paper describes how the UKIAM was used in the development of proposed targets for the reduction of fine particulate PM2.5 in the UK Environment Act, exploring scenarios encompassing different levels of ambition in reducing the emissions of air pollutants up to 2050, with associated health and other environmental benefits. There are two PM2.5 targets, an annual mean concentration target setting a maximum concentration to be reached by a future year, and a population exposure reduction target with benefits for health across the whole population. The work goes further, also demonstrating links to social deprivation. There is a strong connection between climate measures aimed at reducing net GHG emissions to zero by 2050 and future air quality, which may be positive or negative, as illustrated by sectoral studies for road transport where electrification of the fleet needs to match the evolution of energy production, and for domestic heating, where the use of wood for heating is an air quality issue. The UKIAM has been validated against air pollution measurements and other types of modelling, but there are many uncertainties, including future energy projections. [ABSTRACT FROM AUTHOR]

Introduction: Nurses play a central co‐ordinating role in delivering comprehensive care for people with haemophilia and allied bleeding disorders, for which they need a broad range of competencies. The UK Haemophilia Nurses Association (HNA) published a role description in 1994 which was developed into a competency framework in 2014. This has now been updated to reflect current educational and clinical practice. Aim: To summarize the evidence supporting the nurse's advanced role within haemophilia care and develop new competencies to deliver comprehensive care within a multidisciplinary team. Methods: Systematic reviews were identified by PubMed literature search. The HNA conducted workshops to consult its membership, and the authors incorporated this input to update its competency framework within the structure outlined by Health Education England in multiprofessional framework for advanced clinical practice in England (2017). Results: The proposed framework includes five domains (Clinical knowledge, Clinical/direct care, Communication and support, Collaborative practice and Research) supported by indicators for four levels of practice (beginner, competent, proficient and expert). The framework is a tool which nurses and their managers can use to assess skills and knowledge, and identify learning needs appropriate to personal development and improve patient care and outcomes. Conclusion: The HNA has developed a new competency framework to provide a strong foundation for haemophilia specialist nurses to continue improving services for people living with bleeding disorders and their families, as well as supporting personal development alongside new therapeutic options, models of care and follow‐up. [ABSTRACT FROM AUTHOR]

Introduction: Treatment burden for the people with haemophilia has been documented, as has the burden of caring for a child with a common chronic disease such as asthma or diabetes. However, there remains a paucity of data about caregiver burden in haemophilia. Aims: The aim of this study was to evaluate the impact of bleeding on caregivers of children with haemophilia. Caregiver burden was stratified by the clinical status of their child. Methods: A multinational, non‐interventional study of caregivers of children with severe or moderate haemophilia, using the HEMOCABquestionnaire to evaluate caregiver burden. Results: A total of 144 caregivers from seven EU countries participated in the study. Differences in caregiver burden were identified based on the clinical situation of the child. Greater burden was seen in caregivers of children who experienced joint bleeding in the preceding 12 months, or had target joints or reduced range of motion in most domains of the HEMOCAB. Caring for a child with a current inhibitor also caused significantly higher burden for caregivers when compared to caring for a child with tolerized inhibitor or without inhibitor. Caregivers of children with chronic pain reported significantly higher burden in all domains of the HEMOCAB except for "interaction with the father." Conclusion: Caregiver burden can be affected by the child's haemophilia status, particularly if joint health is impacted (eg bleeds, decreased mobility) or if the child suffers from chronic pain which was moderately correlated with joint bleeds. [ABSTRACT FROM AUTHOR]

Introduction: Caring for a child with haemophilia is burdensome and impacting on caregivers' emotional and financial status. This paper assesses the impact of psychosocial determinants on caregivers' burden across European countries. Methods: This non‐interventional study enrolled caregiver/child dyads at haemophilia treatment centres (HTCs) using the "HEMOphilia associated CAregiver Burden scale" (HEMOCAB). Socio‐demographic characteristics and clinical data were collected. Results: A total of 144 dyads from Germany (n = 19), Italy (n = 19), Netherlands (n = 19), Turkey (n = 20), Sweden (n = 21), UK (n = 21) and Poland (n = 25) participated. Caregivers' mean age was 39.84 ± 7 (range 24‐57); 81.3% were mothers, married (80.4%), living with a partner (86.6%), had a college/university degree (66.5%) and worked (74.2%). Around two thirds of caregivers (66.2%) reported that haemophilia affected their life; 26.8% reported an economic impact; 57.6% reported their child cannot do certain things because of his condition. Caregivers lost an average of 8.35 ± 14.5 days due to haemophilia. The highest burden was reported in the HEMOCAB domains "Perception of Child" (37.9 ± 24.7), "Emotional Stress" (37.4 ± 22.6) and "Medical Management" (33.1 ± 22.8). Significantly, higher burden was found in caregivers who reported that haemophilia "affects their life" (P < 0.0001), "has an economic impact" (P < 0.0001), "their child cannot do certain things" (P < 0.0001), "they spent ≥5 h/mo infusing" (P < 0.003) and "they needed ≥3 h/mo to reach the HTC" (P < 0.0001). Conclusion: This "snapshot" analysis of burden related to caring for a child with haemophilia across Europe revealed the greatest burdens are economic, including days lost from work, and things that a child cannot do, impacting on both child and caregiver. [ABSTRACT FROM AUTHOR]

Strengthening intellectual property rights for publicly financed research and development (R&D) ensures that research organizations maximize the full national value of the intellectual property that they generate, but potential negative spillover effects on the perceived value of a research alliance might deter an existing alliance partner from continued collaboration or a potential alliance partner from future collaboration. This study, performed in 2010 within the context of the Council for Scientific and Industrial Research in South Africa, aimed to develop a structural equation modeling-based value-mediation governance decision-making model that will enable engineering managers at publicly financed R&D organizations to select optimal governance modes for the research alliances they are establishing to grow their organizations’ R&D capabilities. [ABSTRACT FROM PUBLISHER]

Objective: This paper explores the use of pharmacoeconomic methods of valuation to health impacts resulting from exposure to poor air quality. In using such methods, interventions that reduce exposure to poor air quality can be directly compared, in terms of value for money (or cost-effectiveness), with competing demands for finite resources, including other public health interventions. Design: Using results estimated as part of a health impact assessment regarding a West Yorkshire Low Emission Zone strategy, this paper quantifies costsaving and health-improving implications of transport policy through its impact on air quality. Data source: Estimates of health-related quality of life and the National Health Service (NHS)/Personal Social Services (PSS) costs for identified health events were based on data from Leeds and Bradford using peerreviewed publications or Office for National Statistics releases. Population: Inhabitants of the area within the outer ring roads of Leeds and Bradford. Main outcomes measures: NHS and PSS costs and quality-adjusted life years (QALYs). Results: Averting an all-cause mortality death generates 8.4 QALYs. Each coronary event avoided saves £28 000 in NHS/PSS costs and generates 1.1 QALYs. For every fewer case of childhood asthma, there will be NHS/PSS cost saving of £3000 and a health benefit of 0.9 QALYs. A single term, low birthweight birth avoided saves £2000 in NHS/PSS costs. Preventing a preterm birth saves £24 000 in NHS/PSS costs and generates 1.3 QALYs. A scenario modelled in the West Yorkshire Low Emission Zone Feasibility Study, where pre-EURO 4 buses and HGVs are upgraded to EURO 6 by 2016 generates an annual benefit of £2.08 million and a one-off benefit of £3.3 million compared with a net present value cost of implementation of £6.3 million. Conclusions: Interventions to improve air quality and health should be evaluated and where improvement of population health is the primary objective, cost-effectiveness analysis using a NHS/PSS costs and QALYs framework is an appropriate methodology. [ABSTRACT FROM AUTHOR]

The Competition Amendment Act introduced section 10A, which provides the Competition Commission with the powers to investigate complex monopoly conduct in a market and allows the Competition Tribunal, under certain conditions, to prohibit such behaviour. Although more than five years have elapsed since the Competition Amendment Act was promulgated, this provision has yet to come into force. However, when it eventually does so, it will mark a significant change in South African competition law, as it seeks to regulate firms' consciously parallel conduct. This is coordinated conduct that occurs without communication or agreement, but results in the prevention or substantial lessening of competition. Examples of horizontal tacit coordination practices include price leadership and facilitating practices, such as information exchanges and price signaling. The successful implementation of the amendment poses problems for the competition authorities in assessing the competitive effects of complex monopoly conduct and in providing effective remedies. Oligopoly markets result in mutual interdependent decision-making by firms, which can lead to market outcomes similar to explicit collusion. However, a further and little noticed issue is that firms in oligopolistic markets have opportunities to use focal points to determine coordinated strategies. This paper explores the nature and role of focal point pricing, which can lead to prices that are above competitive levels. The South African banking industry is used as an example. We find that focal point pricing is difficult to control, making the successful implementation of section 10A even more problematic. Moreover, the proposed amendment provides scope for the imposition of structural remedies by the Competition Tribunal, a function that the Competition Tribunal is ill-suited to perform. [ABSTRACT FROM AUTHOR]

The ubiquity of mobile technology offers the potential for instantaneous and two-way transfer of information, as well as the potential for improving medical care delivery and extending it to those in countries and regions with a less developed medical infrastructure. This review considers the role of mobile health (mHealth) technology in managing hemophilia. This is a disease area in which good record-keeping is an essential component of home-based hemophilia care. Health care professionals contribute patients' data to national registries and databases and frequently interrogate those data for commercial and academic purposes. Only rarely are the data used to directly improve the care of the individual patient. Patient-focused apps designed to respond to an individual's personal data may offer the potential to empower patients to live healthier lifestyles, reinforcing the care provided by health care professionals and offering a mechanism for peer-support and promoting adherence to an individualized management plan. [ABSTRACT FROM AUTHOR]

Cost-benefit analysis can be used to provide guidance for emerging policy priorities in reducing nitrogen (N) pollution. This paper provides a critical and comprehensive assessment of costs and benefits of the various flows of N on human health, ecosystems and climate stability in order to identify major options for mitigation. The social cost of impacts of N in the EU27 in 2008 was estimated between €75-485 billion per year. A cost share of around 60% is related to emissions to air. The share of total impacts on human health is about 45% and may reflect the higher willingness to pay for human health than for ecosystems or climate stability. Air pollution by nitrogen also generates social benefits for climate by present cooling effects of N containing aerosol and C-sequestration driven by N deposition, amounting to an estimated net benefit of about €5 billion/yr. The economic benefit of N in primary agricultural production ranges between €20-80 billion/yr and is lower than the annual cost of pollution by agricultural N which is in the range of €35-230 billion/yr. Internalizing these environmental costs would lower the optimum annual N-fertilization rate in Northwestern Europe by about 50 kg/ha. Acknowledging the large uncertainties and conceptual issues of our cost-benefit estimates, the results support the priority for further reduction of NH3 and NOx emissions from transport and agriculture beyond commitments recently agreed in revision of the Gothenburg Protocol. [ABSTRACT FROM AUTHOR]

Currently, many cities in Europe are affected by concentrations of PM2.5 and NO2 above the WHO guidelines on the protection of human health. This is a global problem in which the growth of road transport constitutes a major factor. Looking to the future, electric vehicles (EVs) are considered to be the choice technology for reducing road transport greenhouse gas emissions, but their impact on air quality needs to be considered. Taking the UK as a case study, this paper begins by understanding the trajectory of a future scenario without the introduction of EVs, reflecting on the latest emission control improvements in internal combustion engine vehicles (ICEVs). This is then compared to a 2050 scenario in which the introduction of EVs, based on the UK government's Transport Decarbonisation Plan, is reviewed. This plan includes a ban on the sale of ICEV cars and LGVs, beginning in 2030, with the subsequent electrification of heavier vehicles. By 2030, population exposure to NOx was found to be significantly reduced in the ICEV scenario, with a marginal further reduction found for the EV scenario. The EV scenario further reduced NOx exposure by 2050, with most of the benefits being realized before 2040. For the ICEV and EV scenario, PM2.5 emissions were largely unchanged due to the primary contribution of non-exhaust emissions, suggesting that EVs are likely to yield relatively smaller changes in exposure to PM2.5 than for NOx. [ABSTRACT FROM AUTHOR]

The paper presents a framework for the analysis of external costs of environmental burdens, namely an impact pathway analysis, often coupled with the inventory stage of life cycle assessment (LCA). The ground rule is: quantify as much as possible in terms of burdens (pollutant emissions, etc.), impacts, and their monetary equivalent, then use multi-criteria analysis (MCA) for any remaining impacts that are considered to be too uncertain or defy quantification through to monetization. Although MCA could be used directly on estimates of burdens or impacts, monetary valuation provides a mechanism for consistent weighting of impacts categories based on assessment of public preference. Further advantages of extending LCA through detailed impact assessment combined with monetary valuation are that it greatly simplifies MCA by combining a large number of different environmental impact categories, thereby avoiding an unmanageably large number of criteria, and also facilitates cost benefit analysis (CBA). The risks are noted of inappropriate use of the tools or interpretation/use of the results, and recommendations are made for improved practice. These points are illustrated with examples. The key messages are: (1) that policies should be targeted correctly to give a clear signal which source of a burden should be reduced by how much; (2) that analysts should take into account the needs of policy makers and the link between the analysis and possible policy applications; and (3) that current LCA practice gives limited guidance in both areas, largely through a lack of consideration of the relative and absolute importance of different types of impact. However, this is precisely the strength of external costs analysis, particularly when used with MCA. [ABSTRACT FROM AUTHOR]

The article reports on how research into professional development profiling has been implemented within undergraduate secondary initial teacher education programmes in a large United Kingdom university. At the time of planning (1995) of a new secondary teacher education programme there, there was an expectation from the University that recommendations for the inclusion of professional development profiling from the Enterprise Initiative for Higher Education should feature in all new courses. Several curriculum areas in the University, including initial teacher education, took up this opportunity and were able to access some funding for development costs. The subsequent research reported upon in this article covers the first 3 years of implementing the professional development profile and relates this process to the experience of using profiles in the USA, other United Kingdom teacher education organisations and the literature of professional development. Data were obtained over a 4-year period (1995–98) by interviews with students and school mentors, from an analysis of the contents of the portfolios and by questionnaire. This period of time was one of considerable change, in that the Government established the Teacher Training Agency and required providers to move to a competency-based model, which required conformity or a risk of cuts in the funding of student places. The main findings were that constructing a professional development profile for the duration of an undergraduate course raised many problematic issues about the nature of teaching as a profession, thereby ensuring that continued reflection on this matter and the issues involved would remain on the agenda. In the process it stimulated much debate between tutors, teachers with responsibility for students in schools and the students themselves, at a time when many concerned in the process had some major reservations about the new initiatives imposed by the Government. [ABSTRACT FROM PUBLISHER]

• We describe the UK Integrated Assessment Model applied to PM 2.5 policy applications. • We quantify exceedance of the WHO guideline in 2016. • We quantify source contributions to PM 2.5 concentrations in the UK. • We define metrics, PWMC and PWME, which focus policy on the most exposed populations. • We discuss uncertainties related to PM 2.5 modelling. Source apportionment and the effect of reducing individual sources is important input for the development of strategies to address air pollution. The UK Integrated Assessment Model, UKIAM, has been developed for this purpose as a flexible framework, combining information from different atmospheric dispersion models to cover different pollutant contributions, and span the range from European to local scale. In this paper we describe the UKIAM as developed for SO 2 , NOx, NH 3 , PM 2.5 and VOCs. We illustrate its versatility and application with assessment of current PM 2.5 concentrations and exposure of the UK population, as a case-study that has been used as the starting point to investigate potential improvement towards attainment of the WHO guideline of 10 µg/m3. [ABSTRACT FROM AUTHOR]

Fine particulate matter (PM 2.5 , particles with a mass median aerodynamic diameter of less than 2.5 micrometers) in the atmosphere is associated with severe negative impacts on human health, and the gases sulfur dioxide, nitrogen oxides, and ammonia are the main PM 2.5 precursors. However, their contribution to global health impacts has not yet been analyzed. Here, we show that nitrogen accounted for 39% of global PM 2.5 exposure in 2013, increasing from 30% in 1990 with rising reactive nitrogen emissions and successful controls on sulfur dioxide. Nitrogen emissions to air caused an estimated 23.3 million years of life lost in 2013, corresponding to an annual welfare loss of 420 billion United States dollars for premature death. The marginal abatement cost of ammonia emission is only 10% that of nitrogen oxides emission globally, highlighting the priority for ammonia reduction.

The potential to capture additional air pollutants by introducing more vegetation or changing existing short vegetation to woodland on first sight provides an attractive route for lowering urban pollution. Here, an atmospheric chemistry and transport model was run with a range of landcover scenarios to quantify pollutant removal by the existing total UK vegetation as well as the UK urban vegetation and to quantify the effect of large-scale urban tree planting on urban air pollution. UK vegetation as a whole reduces area (population)-weighted concentrations significantly, by 10% (9%) for PM 2.5 , 30% (22%) for SO 2 , 24% (19%) for NH 3 and 15% (13%) for O 3 , compared with a desert scenario. By contrast, urban vegetation reduces average urban PM 2.5 by only approximately 1%. Even large-scale conversion of half of existing open urban greenspace to forest would lower urban PM 2.5 by only another 1%, suggesting that the effect on air quality needs to be considered in the context of the wider benefits of urban tree planting, e.g. on physical and mental health. The net benefits of UK vegetation for NO 2 are small, and urban tree planting is even forecast to increase urban NO 2 and NO x concentrations, due to the chemical interaction with changes in BVOC emissions and O 3 , but the details depend on tree species selection. By extrapolation, green infrastructure projects focusing on non-greenspace (roadside trees, green walls, roof-top gardens) would have to be implemented at very large scales to match this effect. Downscaling of the results to micro-interventions solely aimed at pollutant removal suggests that their impact is too limited for their cost-benefit analysis to compare favourably with emission abatement measures. Urban vegetation planting is less effective for lowering pollution than measures to reduce emissions at source. The results highlight interactions that cannot be captured if benefits are quantified via deposition models using prescribed concentrations, and emission damage costs. This article is part of a discussion meeting issue 'Air quality, past present and future'.