Establishing the values for patient engagement (PE) in health-related quality of life (HRQoL) research: an international, multiple-stakeholder perspective

PurposeActive patient engagement is increasingly viewed as essential to ensuring that patient-driven perspectives are considered throughout the research process. However, guidance for patient engagement (PE) in HRQoL research does not exist, the evidence-base for practice is limited, and we know relatively little about underpinning values that can impact on PE practice. This is the first study to explore the values that should underpin PE in contemporary HRQoL research to help inform future good practice guidance. MethodsA modified ‘World Café’ was hosted as a collaborative activity between patient partners, clinicians and researchers: self-nominated conference delegates participated in group discussions to explore values associated with the conduct and consequences of PE. Values were captured via post-it notes and by nominated note-takers. Data were thematically analysed: emergent themes were coded and agreement checked. Association between emergent themes, values and the Public Involvement Impact Assessment Framework were explored. ResultsEighty participants, including 12 patient partners, participated in the 90-min event. Three core values were defined: (1) building relationships; (2) improving research quality and impact; and (3) developing best practice. Participants valued the importance of building genuine, collaborative and deliberative relationships—underpinned by honesty, respect, co-learning and equity—and the impact of effective PE on research quality and relevance. Conclusions An explicit statement of values seeks to align all stakeholders on the purpose, practice and credibility of PE activities. An innovative, flexible and transparent research environment was valued as essential to developing a trustworthy evidence-base with which to underpin future guidance for good PE practice.Peer reviewe

On the vertical distribution of smoke in the Amazonian atmosphere during the dry season

PublishedLidar observations of smoke aerosols have been analysed from six flights of the Facility for Airborne Atmospheric Measurements BAe-146 research aircraft over Brazil during the biomass burning season (September 2012). A large aerosol optical depth (AOD) was observed, typically ranging 0.4–0.9, along with a typical aerosol extinction coefficient of 100–400 Mm−1. The data highlight the persistent and widespread nature of the Amazonian haze, which had a consistent vertical structure, observed over a large distance ( ∼ 2200 km) during a period of 14 days. Aerosols were found near the surface; but the larger aerosol load was typically found in elevated layers that extended from 1–1.5 to 4–6 km. The measurements have been compared to model predictions with the Met Office Unified Model (MetUM) and the ECMWF-MACC model. The MetUM generally reproduced the vertical structure of the Amazonian haze observed with the lidar. The ECMWF-MACC model was also able to reproduce the general features of smoke plumes albeit with a small overestimation of the AOD. The models did not always capture localised features such as (i) smoke plumes originating from individual fires, and (ii) aerosols in the vicinity of clouds. In both these circumstances, peak extinction coefficients of the order of 1000–1500 Mm−1 and AODs as large as 1–1.8 were encountered, but these features were either underestimated or not captured in the model predictions. Smoke injection heights derived from the Global Fire Assimilation System (GFAS) for the region are compatible with the general height of the aerosol layers.Airborne data were obtained using the BAe-146-301 Atmospheric Research Aircraft (ARA) flown by Directflight Ltd and managed by the Facility for Airborne Atmospheric Measurements (FAAM), which is a joint entity of the Natural Environment Research Council (NERC) and the Met Office. SAMBBA was funded by the Met Office and NERC (grant NE/J009822/1). Patrick Chazette and the Commissariat à l’Energie Atomique et aux Energies Alternatives (CEA) are kindly thanked for help fixing our lidar prior to SAMBB

Cost of Salmonella infections in Australia, 2015

Copyright Ó, International Association for Food Protection Gastroenteritis caused from infections with Salmonella enterica (salmonellosis) causes significant morbidity in Australia. In addition to acute gastroenteritis, approximately 8.8% of people develop irritable bowel syndrome (IBS) and 8.5% of people develop reactive arthritis (ReA). We estimated the economic cost of salmonellosis and associated sequel illnesses in Australia in a typical year circa 2015. We estimated incidence, hospitalizations, other health care usage, absenteeism, and premature mortality for four age groups using a variety of complementary data sets. We calculated direct costs (health care) and indirect costs (lost productivity and premature mortality) by using Monte Carlo simulation to estimate 90% credible intervals (CrI) around our point estimates. We estimated that 90,833 cases, 4,312 hospitalizations, and 19 deaths occurred from salmonellosis in Australia circa 2015 at a direct cost of AUD 23.8 million (90% CrI, 19.3 to 28.9 million) and a total cost of AUD 124.4 million (90% CrI, 107.4 to 143.1 million). When IBS and ReA were included, the estimated direct cost was 35.7 million (90% CrI, 29.9 to 42.7 million) and the total cost was AUD 146.8 million (90% CrI, 127.8 to 167.9 million). Foodborne infections were responsible for AUD 88.9 million (90% CrI, 63.9 to 112.4 million) from acute salmonellosis and AUD 104.8 million (90% CrI, 75.5 to 132.3 million) when IBS and ReA were included. Targeted interventions to prevent illness could considerably reduce costs and societal impact from Salmonella infections and sequel illnesses in Australia

The influence of lower-limb prostheses technology on Paracanoeing time-trial performance

Within the Paracanoeing discipline, it is important to ensure appropriate control is achieved by a paddler with a disability. However, this Paralympic Games discipline has seen very little attention to date. The aims of this study were to understand the kinematic impact to a paracanoeist when not utilising the use of a prosthetic lowerlimb. A kayaker with a uni-lateral transfemoral amputation completed several 200m maximal efforts both with and without their prosthesis. When the prosthetic limb was removed, there were significant differences found in stroke rate, stroke speed, stroke length and overall power output. Sagittal and frontal video analysis demonstrated the residual limb movements when paddling and indicated where support would be required to improve the kayak’s control. It is recommended that those with lower-limb absence wishing to paddle a kayak competitively utilise the use of a prostheses designed for the kayaking environment that supports the residual limb at both the upper and inner thigh and the distal end

Biomass Burning Aerosols in the Amazon Basin, Characterised by Lidar, Optical Particle Counters, and Modelling

This is the final version. Available from EDP Sciences via the DOI in this record. This article has no abstract.Natural Environment Research Council (NERC)Met Offic

Metallicities of Planet Hosting Stars: A Sample of Giants and Subgiants

This work presents a homogeneous derivation of atmospheric parameters and iron abundances for a sample of giant and subgiant stars which host giant planets, as well as a control sample of subgiant stars not known to host giant planets. The analysis is done using the same technique as for our previous analysis of a large sample of planet-hosting and control sample dwarf stars. A comparison between the distributions of [Fe/H] in planet-hosting main-sequence stars, subgiants, and giants within these samples finds that the main-sequence stars and subgiants have the same mean metallicity of \simeq +0.11 dex, while the giant sample is typically more metal poor, having an average metallicity of = -0.06 dex. The fact that the subgiants have the same average metallicities as the dwarfs indicates that significant accretion of solid metal-rich material onto the planet-hosting stars has not taken place, as such material would be diluted in the evolution from dwarf to subgiant. The lower metallicity found for the planet-hosting giant stars in comparison with the planet-hosting dwarfs and subgiants is interpreted as being related to the underlying stellar mass, with giants having larger masses and thus, on average larger-mass protoplanetary disks. In core accretion models of planet formation, larger disk masses can contain the critical amount of metals necessary to form giant planets even at lower metallicities.Comment: 38 pages, 7 figures, 4 tables, accepted for publication in Ap

Recommendations for exercise adherence measures in musculoskeletal settings : a systematic review and consensus meeting (protocol)

Background: Exercise programmes are frequently advocated for the management of musculoskeletal disorders; however, adherence is an important pre-requisite for their success. The assessment of exercise adherence requires the use of relevant and appropriate measures, but guidance for appropriate assessment does not exist. This research will identify and evaluate the quality and acceptability of all measures used to assess exercise adherence within a musculoskeletal setting, seeking to reach consensus for the most relevant and appropriate measures for application in research and/or clinical practice settings. Methods/design: There are two key stages to the proposed research. First, a systematic review of the quality and acceptability of measures used to assess exercise adherence in musculoskeletal disorders; second, a consensus meeting. The systematic review will be conducted in two phases and reported in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines to ensure a robust methodology. Phase one will identify all measures that have been used to assess exercise adherence in a musculoskeletal setting. Phase two will seek to identify published and unpublished evidence of the measurement and practical properties of identified measures. Study quality will be assessed against the COnsensus-based Standards for the selection of health Measurement Instruments (COSMIN) guidelines. A shortlist of best quality measures will be produced for consideration during stage two: a meeting of relevant stakeholders in the United Kingdom during which consensus on the most relevant and appropriate measures of exercise adherence for application in research and/or clinical practice settings will be sought. Discussion: This study will benefit clinicians who seek to evaluate patients’ levels of exercise adherence and those intending to undertake research, service evaluation, or audit relating to exercise adherence in the musculoskeletal field. The findings will impact upon new research studies which aim to understand the factors that predict adherence with exercise and which test different adherence-enhancing interventions. PROSPERO reference: CRD4201300621

Evaluation of the Victorian Healthy Homes Program: protocol for a randomised controlled trial.

INTRODUCTION: The evaluation of the Victorian Healthy Homes Program (VHHP) will generate evidence about the efficacy and cost-effectiveness of home upgrades to improve thermal comfort, reduce energy use and produce health and economic benefits to vulnerable households in Victoria, Australia. METHODS AND ANALYSIS: The VHHP evaluation will use a staggered, parallel group clustered randomised controlled trial to test the home energy intervention in 1000 households. All households will receive the intervention either before (intervention group) or after (control group) winter (defined as 22 June to 21 September). The trial spans three winters with differing numbers of households in each cohort. The primary outcome is the mean difference in indoor average daily temperature between intervention and control households during the winter period. Secondary outcomes include household energy consumption and residential energy efficiency, self-reported respiratory symptoms, health-related quality of life, healthcare utilisation, absences from school/work and self-reported conditions within the home. Linear and logistic regression will be used to analyse the primary and secondary outcomes, controlling for clustering of households by area and the possible confounders of year and timing of intervention, to compare the treatment and control groups over the winter period. Economic evaluation will include a cost-effectiveness and cost-benefit analysis. ETHICS AND DISSEMINATION: Ethical approval was received from Victorian Department of Human Services Human Research Ethics Committee (reference number: 04/17), University of Technology Sydney Human Research Ethics Committee (reference number: ETH18-2273) and Australian Government Department of Veterans Affairs. Study results will be disseminated in a final report and peer-reviewed journals. TRIAL REGISTRATION NUMBER: ACTRN12618000160235

Patient and public involvement in a UK National Institute for Health Research Programme Grant for Applied Research:Experiences from the Chronic Headache Education and Self-management Study (CHESS)

Background: Patient and public involvement (PPI) plays a crucial role in ensuring research is carried out in conjunction with the people that it will impact upon. In this article, we present our experiences and reflections from working collaboratively with patients and public through the lifetime of an National Institute for Health Research (NIHR) programme grant; the Chronic Headache Education and Self-management Study (CHESS) which took place between 2015 and 2020. PPI over the course of CHESS: We worked closely with three leading UK migraine charities and a lay advisory group throughout the programme. We followed NIHR standards and used the Guidance for Reporting Involvement of Patients and the Public checklist. We consulted our PPI contacts using a variety of methods depending on the phase of the study and the nature of the request. This included emails, discussions, and face-to-face contact. PPI members contributed throughout the study in the programme development, in the grant application, ethics documentation, and trial oversight. During the feasibility study; in supporting the development of a classification interview for chronic headache by participating in a headache classification conference, assessing the relevance, and acceptability of patient-reported outcome measures by helping to analyse cognitive interview data, and testing the smartphone application making suggestions on how best to present the summary of data collected for participants. Due to PPI contribution, the content and duration of the study intervention were adapted and a Delphi study with consensus meeting developed a core outcome set for migraine studies. Conclusions: The involvement of the public and patients in CHESS has allowed us to shape its overall design, intervention development, and establish a core outcome set for future migraine studies. We have reflected on many learning points for the future application of PPI