Commissioning care for people with dementia at the end of life: a mixed methods study.

This is an Open Access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/ The version of record, Zoe M Gotts, Nicole Baur, Emma McLellan, Claire Goodman, Louise Robinson and Richard P Lee, ‘Commissioning care for people with dementia at the end of life: a mixed methods study’, BMJ Open, 2016,; 6: e013554, is available online at doi: 10.1136/ bmjopen-2016-013554Objectives To understand how end of life care for people with dementia is currently commissioned (.e contracted)and organised, with a view to informing the development of commissioning guidance for good quality community-based end of life care in dementia. Design Mixed-methods study; narrative review and qualitative interviews. Setting 8 NHS clinical commissioning groups and 5 Adult Services across England. Methods Narrative review of evidence; 20 semi structured interviews (telephone and face-to-face) with professionals involved in commissioning end of life care for people with dementia. Main outcome measures Summary of the existing evidence base for commissioning, commissioners’ approaches to the commissioning process for end of life care for people with dementia in England. Results In the context of commissioning end of life care for people with dementia, the literature review generated three key themes; (1) importance of joint commissioning; (2) lack of clarity for the process; and (3) factors influencing commissioning. In exploring health professionals’ perceptions of the commissioning process, ‘uncertainty’ was elicited as an overarching theme across the CCGs interviewed. Organisation of the process, lack of expertise, issues surrounding integration and the art of specification were considered important factors that contribute to the uncertainty surrounding the commissioning process. Conclusions The current evidence base for commissioning end of life care is limited with considerable uncertainty as how clinical commissioners in England undertake the process to ensure future services are evidence-based. Strengths and limitations of this study • The use of a multimethod approach (narrative review, qualitative interviews) allowed for triangulation of our findings. • The evidence indentified in the review may be limited given that ‘commissioning’ is a relatively new term in England. • The review presented is a narrative review; the manuscripts were not subject to a quality assessment process. • Generalisability of findings might be affected by the small number of published studies, their heterogeneity in methodologies, and small sample sizes. • The study highlights that information on commissioning specifically for health and social care in England is limited; this is mirrored in commissioners’ accounts.Peer reviewe

The feasibility and challenges of energy self-sufficient wastewater treatment plants

Energy efficiency optimization is crucial for wastewater treatment plants (WWTPs) because of increasing energy costs and concerns about global climate change. Energy efficiency optimization can be achieved through a combination of energy recovery from the wastewater treatment process and energy saving-related technologies. Through these two approaches energy self-sufficiency of WWTPs is achievable, and research is underway to reduce operation costs and energy consumption and to achieve carbon neutrality. In this paper, we analyze energy consumption and recovery in WWTPs and characterize the factors that influence energy use in WWTPs, including treatment techniques, treatment capacities, and regional differences. Recent advances in the optimization of energy recovery technologies and theoretical analysis models for the analysis of different technological solutions are presented. Despite some challenges in implementation, such as technological barriers and high investment costs, particularly in developing countries, this paper highlights the potential for more energy self-sufficient WWTPs to be established in the future

Development of the Malocclusion Impact Questionnaire (MIQ) to measure the oral health-related quality of life of young people with malocclusion: part 1 - qualitative inquiry

OBJECTIVES: To seek the views of adolescents with malocclusion about how the appearance and arrangement of their teeth affects their everyday life and to incorporate these views into a new Malocclusion Impact Questionnaire (MIQ). METHODS: Semi-structured interviews were undertaken with a purposive sample of 30 young people (10-16 years) referred for orthodontic treatment to two dental teaching hospitals. The interviews were recorded, transcribed and analysed using framework analysis. Several themes and sub themes were identified and these were used to identify items to include in the new measure. RESULTS: Three themes emerged which were: concerns about the appearance of their teeth, effect on social interactions and oral health/function. Participants expressed the view that their teeth did not look normal, causing them embarrassment and a lack of confidence, particularly when they were with their peers or having their photograph taken. Concerns regarding the potential effect of a malocclusion on oral health, in terms of food becoming stuck between crooked teeth, interferences when chewing and increased risk of damaging the teeth were also identified. The themes were used to generate individual items for inclusion in the questionnaire. CONCLUSIONS: Common themes relating to the impact of malocclusion on the lives of young people were identified and generated items for the new MIQ to measure the oral health-related quality of life of young people with malocclusion. Part 2 outlines the further development and testing of the MIQ

Understanding transience and participation in university student-led food gardens

In an increasingly mobile world, transience is becoming the norm. Sustainable community food initiatives, therefore, must organise to withstand high turnover of volunteers. Using a case study of the United Kingdom’s National Union of Students’ food growing scheme in universities, this paper aims to map the causes and effects of short-term, irregular, and low participation using a causal loop diagram to understand how to mitigate their negative impacts and improve participation. Data was gathered through interviews, workshops, photovoice, a fishbowl discussion, and a reflective diary. We found three amplifying feedback loops increasing short-term, irregular and low participation, their causes, and their impacts. These feedback loops were precariously buffered by a continuous in-flow of new potential participants each academic year. We also found that the stakeholders of these gardens conceptualised time akin to both temporary and permanent organisations, and these differing conceptualisations were a source of tension. Furthermore, although ‘organisational amnesia’ was a problem, the gardens were still learningful spaces. We recommend both upstream and downstream solutions are implemented to buffer the impacts of transience and suggest that university and students’ union staff could play a crucial and subtle supporting role

How to Repurpose the University: A Resilience Lens on Sustainability Governance

Universities have an important role in moving society towards a more sustainablefuture. However, this will require us to repurpose universities, reorienting and refocusingthe different university domains (education, research, campus, and outreach) towardssustainability. The governance structures and processes used to embed sustainabilityinto the activities and operations of the institution are critical to achieving the requiredtransformation. Our current university systems which are seen as contributing tosocio-ecological system unsustainability are resilient to change due to slow variablessuch as organisational and sector-wide prevailing paradigms and culture. Therefore,to repurpose a university requires us to destabilise our prevailing system, crossing athreshold into a new stable system of a ‘sustainable university’ across all its domains.This paper utilises an adaptation of Biggs et al. (2012) resilience principles for thegovernance of social-ecological systems to provide a framework to consider aspectsof university governance for sustainability that can be utilised to repurpose universitiestowards sustainability, and destabilize unsustainable elements of the system. Thispaper draws out examples relating to sustainability governance within universities withregards to the four principles of (i) managing diversity and redundancy, (ii) managingconnectivity, (iii) managing slow variables and feedbacks, and (iv) encouraging learningand experimentation within the context of complex adaptive systems. In this article,we have shown that using resilience in a non-normative way is possible (to decreaseresilience of an unsustainable system), and that it can also be valuable to help understandhow to shift organisational governance towards a particular end-state (in this case,university governance that advances sustainability). This paper provides an exampleof how to operationalise resilience principles of relevance to the resilience literature aswell as providing a practical framework to guide higher education institution governancefor sustainability

Effects of antiplatelet therapy on stroke risk by brain imaging features of intracerebral haemorrhage and cerebral small vessel diseases: subgroup analyses of the RESTART randomised, open-label trial

Background Findings from the RESTART trial suggest that starting antiplatelet therapy might reduce the risk of recurrent symptomatic intracerebral haemorrhage compared with avoiding antiplatelet therapy. Brain imaging features of intracerebral haemorrhage and cerebral small vessel diseases (such as cerebral microbleeds) are associated with greater risks of recurrent intracerebral haemorrhage. We did subgroup analyses of the RESTART trial to explore whether these brain imaging features modify the effects of antiplatelet therapy

BHPR research: qualitative1. Complex reasoning determines patients' perception of outcome following foot surgery in rheumatoid arhtritis

Background: Foot surgery is common in patients with RA but research into surgical outcomes is limited and conceptually flawed as current outcome measures lack face validity: to date no one has asked patients what is important to them. This study aimed to determine which factors are important to patients when evaluating the success of foot surgery in RA Methods: Semi structured interviews of RA patients who had undergone foot surgery were conducted and transcribed verbatim. Thematic analysis of interviews was conducted to explore issues that were important to patients. Results: 11 RA patients (9 ♂, mean age 59, dis dur = 22yrs, mean of 3 yrs post op) with mixed experiences of foot surgery were interviewed. Patients interpreted outcome in respect to a multitude of factors, frequently positive change in one aspect contrasted with negative opinions about another. Overall, four major themes emerged. Function: Functional ability & participation in valued activities were very important to patients. Walking ability was a key concern but patients interpreted levels of activity in light of other aspects of their disease, reflecting on change in functional ability more than overall level. Positive feelings of improved mobility were often moderated by negative self perception ("I mean, I still walk like a waddling duck”). Appearance: Appearance was important to almost all patients but perhaps the most complex theme of all. Physical appearance, foot shape, and footwear were closely interlinked, yet patients saw these as distinct separate concepts. Patients need to legitimize these feelings was clear and they frequently entered into a defensive repertoire ("it's not cosmetic surgery; it's something that's more important than that, you know?”). Clinician opinion: Surgeons' post operative evaluation of the procedure was very influential. The impact of this appraisal continued to affect patients' lasting impression irrespective of how the outcome compared to their initial goals ("when he'd done it ... he said that hasn't worked as good as he'd wanted to ... but the pain has gone”). Pain: Whilst pain was important to almost all patients, it appeared to be less important than the other themes. Pain was predominately raised when it influenced other themes, such as function; many still felt the need to legitimize their foot pain in order for health professionals to take it seriously ("in the end I went to my GP because it had happened a few times and I went to an orthopaedic surgeon who was quite dismissive of it, it was like what are you complaining about”). Conclusions: Patients interpret the outcome of foot surgery using a multitude of interrelated factors, particularly functional ability, appearance and surgeons' appraisal of the procedure. While pain was often noted, this appeared less important than other factors in the overall outcome of the surgery. Future research into foot surgery should incorporate the complexity of how patients determine their outcome Disclosure statement: All authors have declared no conflicts of interes

Case Reports1. A Late Presentation of Loeys-Dietz Syndrome: Beware of TGFβ Receptor Mutations in Benign Joint Hypermobility

Background: Thoracic aortic aneurysms (TAA) and dissections are not uncommon causes of sudden death in young adults. Loeys-Dietz syndrome (LDS) is a rare, recently described, autosomal dominant, connective tissue disease characterized by aggressive arterial aneurysms, resulting from mutations in the transforming growth factor beta (TGFβ) receptor genes TGFBR1 and TGFBR2. Mean age at death is 26.1 years, most often due to aortic dissection. We report an unusually late presentation of LDS, diagnosed following elective surgery in a female with a long history of joint hypermobility. Methods: A 51-year-old Caucasian lady complained of chest pain and headache following a dural leak from spinal anaesthesia for an elective ankle arthroscopy. CT scan and echocardiography demonstrated a dilated aortic root and significant aortic regurgitation. MRA demonstrated aortic tortuosity, an infrarenal aortic aneurysm and aneurysms in the left renal and right internal mammary arteries. She underwent aortic root repair and aortic valve replacement. She had a background of long-standing joint pains secondary to hypermobility, easy bruising, unusual fracture susceptibility and mild bronchiectasis. She had one healthy child age 32, after which she suffered a uterine prolapse. Examination revealed mild Marfanoid features. Uvula, skin and ophthalmological examination was normal. Results: Fibrillin-1 testing for Marfan syndrome (MFS) was negative. Detection of a c.1270G > C (p.Gly424Arg) TGFBR2 mutation confirmed the diagnosis of LDS. Losartan was started for vascular protection. Conclusions: LDS is a severe inherited vasculopathy that usually presents in childhood. It is characterized by aortic root dilatation and ascending aneurysms. There is a higher risk of aortic dissection compared with MFS. Clinical features overlap with MFS and Ehlers Danlos syndrome Type IV, but differentiating dysmorphogenic features include ocular hypertelorism, bifid uvula and cleft palate. Echocardiography and MRA or CT scanning from head to pelvis is recommended to establish the extent of vascular involvement. Management involves early surgical intervention, including early valve-sparing aortic root replacement, genetic counselling and close monitoring in pregnancy. Despite being caused by loss of function mutations in either TGFβ receptor, paradoxical activation of TGFβ signalling is seen, suggesting that TGFβ antagonism may confer disease modifying effects similar to those observed in MFS. TGFβ antagonism can be achieved with angiotensin antagonists, such as Losartan, which is able to delay aortic aneurysm development in preclinical models and in patients with MFS. Our case emphasizes the importance of timely recognition of vasculopathy syndromes in patients with hypermobility and the need for early surgical intervention. It also highlights their heterogeneity and the potential for late presentation. Disclosures: The authors have declared no conflicts of interes

Basic science232. Certolizumab pegol prevents pro-inflammatory alterations in endothelial cell function

Background: Cardiovascular disease is a major comorbidity of rheumatoid arthritis (RA) and a leading cause of death. Chronic systemic inflammation involving tumour necrosis factor alpha (TNF) could contribute to endothelial activation and atherogenesis. A number of anti-TNF therapies are in current use for the treatment of RA, including certolizumab pegol (CZP), (Cimzia ®; UCB, Belgium). Anti-TNF therapy has been associated with reduced clinical cardiovascular disease risk and ameliorated vascular function in RA patients. However, the specific effects of TNF inhibitors on endothelial cell function are largely unknown. Our aim was to investigate the mechanisms underpinning CZP effects on TNF-activated human endothelial cells. Methods: Human aortic endothelial cells (HAoECs) were cultured in vitro and exposed to a) TNF alone, b) TNF plus CZP, or c) neither agent. Microarray analysis was used to examine the transcriptional profile of cells treated for 6 hrs and quantitative polymerase chain reaction (qPCR) analysed gene expression at 1, 3, 6 and 24 hrs. NF-κB localization and IκB degradation were investigated using immunocytochemistry, high content analysis and western blotting. Flow cytometry was conducted to detect microparticle release from HAoECs. Results: Transcriptional profiling revealed that while TNF alone had strong effects on endothelial gene expression, TNF and CZP in combination produced a global gene expression pattern similar to untreated control. The two most highly up-regulated genes in response to TNF treatment were adhesion molecules E-selectin and VCAM-1 (q 0.2 compared to control; p > 0.05 compared to TNF alone). The NF-κB pathway was confirmed as a downstream target of TNF-induced HAoEC activation, via nuclear translocation of NF-κB and degradation of IκB, effects which were abolished by treatment with CZP. In addition, flow cytometry detected an increased production of endothelial microparticles in TNF-activated HAoECs, which was prevented by treatment with CZP. Conclusions: We have found at a cellular level that a clinically available TNF inhibitor, CZP reduces the expression of adhesion molecule expression, and prevents TNF-induced activation of the NF-κB pathway. Furthermore, CZP prevents the production of microparticles by activated endothelial cells. This could be central to the prevention of inflammatory environments underlying these conditions and measurement of microparticles has potential as a novel prognostic marker for future cardiovascular events in this patient group. Disclosure statement: Y.A. received a research grant from UCB. I.B. received a research grant from UCB. S.H. received a research grant from UCB. All other authors have declared no conflicts of interes