Daniela Rae

A pragmatic multi-centre randomised controlled trial of fluid loading in high-risk surgical patients undergoing major elective surgery - the FOCCUS study

IntroductionFluid strategies may impact on patient outcomes in major elective surgery. We aimed to study the effectiveness and cost-effectiveness of pre-operative fluid loading in high-risk surgical patients undergoing major elective surgery.MethodsThis was a pragmatic, non-blinded, multi-centre, randomised, controlled trial. We sought to recruit 128 consecutive high-risk surgical patients undergoing major abdominal surgery. The patients underwent pre-operative fluid loading with 25 ml/kg of Ringers solution in the six hours before surgery. The control group had no pre-operative fluid loading. The primary outcome was the number of hospital days after surgery with cost-effectiveness as a secondary outcome.ResultsA total of 111 patients were recruited within the study time frame in agreement with the funder. The median pre-operative fluid loading volume was 1,875 ml (IQR 1,375 to 2,025) in the fluid group compared to 0 (IQR 0 to 0) in controls with days in hospital after surgery 12.2 (SD 11.5) days compared to 17.4 (SD 20.0) and an adjusted mean difference of 5.5 days (median 2.2 days; 95% CI -0.44 to 11.44; P = 0.07). There was a reduction in adverse events in the fluid intervention group (P = 0.048) and no increase in fluid based complications. The intervention was less costly and more effective (adjusted average cost saving: £2,047; adjusted average gain in benefit: 0.0431 quality adjusted life year (QALY)) and has a high probability of being cost-effective.ConclusionsPre-operative intravenous fluid loading leads to a non-significant reduction in hospital length of stay after high-risk major surgery and is likely to be cost-effective. Confirmatory work is required to determine whether these effects are reproducible, and to confirm whether this simple intervention could allow more cost-effective delivery of care.Trial registrationProspective Clinical Trials, ISRCTN32188676

Health Care Delivery Practices in Huntington's Disease Specialty Clinics : An International Survey

Background: Little is known about the organization of clinical services for Huntington’s disease (HD). Objective: To describe how health care services are organized and delivered in HD-clinics taking part in or eligible for the Enroll-HD study. Methods: In 2014, a 69-item survey was administered to sites taking part in or eligible for the Enroll-HD study. Results: Of 231 sites surveyed, 121 (52.2%) sites in Europe, North America, Latin America, and Oceania responded. Most sites in the sample serve large populations, with 61.1% serving more than 1.5 million people, and a further 33% serving >500,000. Almost all (86.0%) centers see patients from outside their region. The majority of centers (59.7%) follow 50–199 patients, 21.9% care for more than 200. Most centers provide care in all stages of HD, and nearly all review pre-symptomatic cases. Multidisciplinary case reviews are offered in 54.5% of sites, with outreach clinics offered by 48.1%. Videoconferencing and telemedicine are used by 23.6%. Separate consultations for caregivers are offered in more than half of the centers. Most centers (70.4%) report following published guidelines or local care pathways for HD. Conclusions: Most centers serve a large population and use a multidisciplinary approach. The survey gives insight into factors underpinning HD service delivery globally. There is a need for more in-depth studies of clinical practice to understand how services are organized and how such features may be associated with quality of care.

H02 Outcome mapping for care delivery interventions for huntington’s disease patients in the community

Background The production of meaningful evidence about the effectiveness of complex care delivery interventions requires clear definition and consistent use of outcomes that matter to key stakeholders (service users and professionals). Outcomes for the evaluation of such interventions in multifaceted neurodegenerative progressive conditions, such as Huntington’s disease (HD) have not been previously reviewed. Objective The objectives of this article are 1) to comprehensively map outcomes reported in the existing literature on care delivery interventions in HD and 2) to identify any convergences/divergences in patterns and stakeholder perspectives across the identified outcomes. Main results A total of 16 studies and supplementary documents were identified measuring 48 outcomes. These were categorised into three outcome categories, 34 outcome types and 47 variables. Only two outcome types, ’Specialist Knowledge and understanding’ and ’Confidence’, previously suggested by service users as important (n=10) were considered in formal care delivery evaluations. Conclusion A large number of outcomes are currently measured and suggested in the evaluation and description of care delivery in HD. This outcome map highlights the inconsistent use of outcomes important to and suggested by key stakeholders. Clear understanding of what intervention mechanisms and interactions may be relevant (and to whom) and produce desired outcomes is missing in existing literature.

K3 Towards improvement in care delivery in huntington’s disease: improve HD

Background The complexity of HD and its progression over time mean that those affected require the care and support of a variety of health, social and voluntary services. Recent research efforts have concentrated on measuring clinical outcomes whereas organisational and patient perspectives have been lacking. There is no consensus as to what outcomes should be used to measure and assess the success of an HD service. Aims Firstly ImproveHD aims to identify, explore and interpret key variations in care organisation and delivery in the early and mid-stages of HD in the UK. Secondly it will identify a set of core outcomes to support consistent evaluation of different care delivery approaches. Methods The project will draw upon a mixed methods approach including: 1) comparative organisational case studies of HD care delivery networks (n = 3) in the UK using interviews with key stakeholders and questionnaires to collect data; 2) the development of a core outcome set, which seeks opinion of different stakeholders by utilising qualitative data and consensus methods to establish what outcomes should be considered ‘core’ when evaluating care delivery in HD. Results/Conclusion ImproveHD aims to address two issues of fundamental importance to understanding and improving the quality of care for people with Huntington’s disease (HD). An overview of the protocol and current evidence will be presented here. Particular emphasis will be placed on discussing the methodological challenges and different theoretical approaches considered when exploring organisational context and developing core outcomes for organisational interventions within the framework of quality improvement.

K2 International guidelines project: an update of non-pharmacological recommendations for huntington’s disease care

Background An evidence-based framework for a basic minimum standard of care is required, not only to maximise health and quality of life for patients and their families, but also to set standards to underpin future clinical trial design. A first set of guidelines outlining some aspects of non-pharmacological management was published in 2012. In an effort to combine and formulate guidelines including pharmacological and non-pharmacological approaches a further review of the available evidence was conducted. Aim The aim is to update recommendations for non-pharmacological management in HD as part of the International Guidelines Project. Methods The guidelines will be developed using a standard methodology provided by the Haute Autorité de Santé (HAS) in France. This formal method ensures the quality and reliability of the guidelines. A systematic and comprehensive review of all available literature aims to identify and critically appraise evidence addressing the effectiveness of various symptomatic treatments. Results From the systematic literature review, 120 papers were identified and extracted of which 77 were considered in the development of the recommendations. There continues to be insufficient evidence to make strong recommendations. Nevertheless, there is a growing body of evidence supporting multi-disciplinary cooperation for the management of global functioning in HD. Furthermore, there is increasing evidence in support of the use of physiotherapy for impairments in strength, stability, and functional independence. Whilst there remains a low level of evidence for the use of speech and language therapy, in the management of dysphagia and weight loss, and occupational therapy, for the adaption of a patient’s environment. Conclusion Although there is progress in areas of Physiotherapy, a paucity of high quality evidence is still lacking in many other areas. Further research is urgently needed on how to manage swallow, weight loss and communication.