Exploring stakeholders' perceptions of peer support for adults with chronic pain: a mixed methods study.

Peer support interventions could play a pivotal role in the management of chronic pain, yet there has not been a study to assess the preferences of adults with chronic pain or healthcare professionals regarding intervention components. Critical gaps in the current research base include understanding the perceptions of those that develop and participate in peer support interventions. This information is crucial for healthcare services, charities and community groups to be able to develop and implement interventions that are both feasible and optimally beneficial for those involved. The aim of this study was to explore the preferences of stakeholders surrounding peer support interventions (PSIs) in order to make recommendations for the design and development of peer support interventions tailored to adults with chronic non-cancer pain. Stakeholders included adults with chronic non-cancer pain and individuals with experience of managing chronic pain or delivering peer support interventions. This research was a mixed-methods sequential explanatory study with two phases. Both phases were conducted with two participant groups: 1) adults with chronic non-cancer pain and 2) individuals with experience of treating chronic pain or delivering peer support interventions. The first phase consisted of an online survey and subsequent analysis with descriptive statistics to determine participant preferences regarding intervention components. The second phase consisted of qualitative semi-structured interviews with framework analysis. This aided in exploring these preferences in greater depth and determining any common similarities or differences amongst and within the participant groups. The key findings from the mixed-method study were focussed on participants expressing a desire for PSIs to be flexible and delivered in multiple ways. Participants wanted programmes with flexible scheduling, offered in as many delivery modes as possible (face-to-face, online, option for follow up via messaging or phone calls) and without obligation or judgment when pain flares prevented their attendance. Participants also expanded on the reasons for wanting flexible offerings as barriers to attendance such as physical and logistical barriers made it difficult to consistently attend in-person gatherings. Participants shared how chronic pain can affect people across the lifespan, so it is valuable to talk with someone from a similar life stage (retired versus working, with or without children). Finally, participants placed high value on individual preferences and suggested whenever a programme is being developed, for organizers to receive input from potential attendees. This research generated new knowledge that can be used to make recommendations for the design and development of peer support interventions tailored to adults with chronic pain. The NHS and other healthcare systems can utilise PSIs as an alternative way to support people living with pain and value person-centred care. Additional exploratory work is required to coproduce, pilot and evaluate a PSI incorporating the key findings from this research

Exploring the experience of participating in a peer support intervention for individuals with chronic non-cancer pain: a qualitative systematic review protocol. [Protocol]

Chronic pain is a prevalent and costly issue. It is defined as pain that persists beyond 12 weeks or past normal healing times. It has been recognized as one of the most prominent causes of disability worldwide and affects up to half of the population in the UK. The cost of chronic pain is also substantial, not only for patients, but also the healthcare system and economy. With such an astounding impact, recent health policies have focused on empowering patients to improve skills with self-management. Improved condition management can be attained by ensuring adequate amounts of social support, particularly support that is condition-specific. Peer support interventions could play a pivotal role in the management of chronic pain as their purpose is to empower patients by equipping them with self-management skills which can aid in improving health outcomes. This is a protocol for a systematic review, the object of which is to synthesize what is known about the patient experience of participating in peer support interventions and identify gaps in the evidence base. This information will be used to make practice recommendations where relevant and to inform further research in the field. It aims to answer the following research questions: 1) What are the perceptions of individuals with chronic non-cancer pain regarding participation in peer support interventions? 2) What are patients' perceptions in terms of format, delivery, role and training of peer support volunteer and duration of intervention? 3) What are the patients' perceptions of the strengths and limitations of peer support interventions? 4) What do patients perceive to be the barriers and facilitators to implementation of peer support interventions

Establishing Key Performance Indicators for Inflammatory Bowel Disease in the United Kingdom

Background and aimsHealthcare quality improvement (QI) is the systematic process to continuously improve the quality of care and outcomes for patients. The landmark Inflammatory Bowel Disease (IBD) UK National Audits provided a means to measure the variation in care, highlighting the need to define the standards of excellence in IBD care. Through a consensus approach, we aimed to establish key performance indicators (KPIs), providing reliable benchmarks for IBD care delivery in UK.MethodsKPIs that measure critical aspects of a patient journey within an IBD service were identified though stakeholder meetings. A two-stage Delphi consensus was then conducted. The first involved a multidisciplinary team of IBD clinicians and patients to refine definitions and methodology. The second stage assessed feasibility and utility of the proposed QI process by surveying gastroenterology services across UK.ResultsFirst, the four proposed KPIs were refined and included time from primary care referral to diagnosis in secondary care, time to treatment recommendation following a diagnosis, appropriate use of steroids and advanced therapies prescreening and assessment. Second, the Delphi consensus reported >85% agreement on the feasibility of local adoption of the QI process and >75% agreement on the utility of benchmarking of the KPIs.ConclusionsThrough a structured approach, we propose quantifiable KPIs for benchmarking to improve and reduce the individual variation in IBD care across the UK

Climate change: the necessary, the possible and the desirable Earth League climate statement on the implications for climate policy from the 5th IPCC Assessment

The development of human civilisations has occurred at a time of stable climate. This climate stability is now threatened by human activity. The rising global climate risk occurs at a decisive moment for world development. World nations are currently discussing a global development agenda consequent to the Millennium Development Goals (MDGs), which ends in 2015. It is increasingly possible to envisage a world where absolute poverty is largely eradicated within one generation and where ambitious goals on universal access and equal opportunities for dignified lives are adopted. These grand aspirations for a world population approaching or even exceeding nine billion in 2050 is threatened by substantial global environmental risks and by rising inequality. Research shows that development gains, in both rich and poor nations, can be undermined by social, economic and ecological problems caused by human-induced global environmental change. Climate risks, and associated changes in marine and terrestrial ecosystems that regulate the resilience of the climate system, are at the forefront of these global risks. We, as citizens with a strong engagement in Earth system science and socio-ecological dynamics, share the vision of a more equitable and prosperous future for the world, yet we also see threats to this future from shifts in climate and environmental processes. Without collaborative action now, our shared Earth system may not be able to sustainably support a large proportion of humanity in the decades ahead

British Society of Gastroenterology guidance for management of inflammatory bowel disease during the COVID-19 pandemic.

The COVID-19 pandemic is putting unprecedented pressures on healthcare systems globally. Early insights have been made possible by rapid sharing of data from China and Italy. In the UK, we have rapidly mobilised inflammatory bowel disease (IBD) centres in order that preparations can be made to protect our patients and the clinical services they rely on. This is a novel coronavirus; much is unknown as to how it will affect people with IBD. We also lack information about the impact of different immunosuppressive medications. To address this uncertainty, the British Society of Gastroenterology (BSG) COVID-19 IBD Working Group has used the best available data and expert opinion to generate a risk grid that groups patients into highest, moderate and lowest risk categories. This grid allows patients to be instructed to follow the UK government's advice for shielding, stringent and standard advice regarding social distancing, respectively. Further considerations are given to service provision, medical and surgical therapy, endoscopy, imaging and clinical trials

Inflammatory bowel disease patient‐reported quality assessment should drive service improvement: A national survey of UK IBD units and patients

© 2022 The Authors. Published by Wiley. This is an open access article available under a Creative Commons licence. The published version can be accessed at the following link on the publisher’s website: https://doi.org/10.1111/apt.17042Background & Aims Healthcare service provision in inflammatory bowel disease (IBD) is often designed to meet targets set by healthcare providers rather than those of patients. It is unclear whether this meets the needs of patients, as assessed by patients themselves. This nationwide study assessed patients' experience of IBD and the healthcare they received, aiming to identify factors in IBD healthcare provision associated with perceived high-quality care. Methods Using the 2019 IBD Standards as a framework, a national benchmarking tool for quality assessment in IBD was developed by IBD UK, comprising a Patient Survey and Service Self-Assessment. Results In all, 134 IBD services and 9757 patients responded. Perceived quality of care was lowest in young adults then increased with age, was higher in males and those >2 years since diagnosis. No hospital services met all the National IBD Standards for recommended workforce numbers. Key metrics associated with patient-reported high-quality care were as follows: identification as a tertiary centre, patient information availability, shared decision-making, rapid response to contact for advice, access to urgent review, joint medical/surgical clinics and access to research (all p < 0.001). Higher numbers of IBD nurse specialists in a service was strongly associated with patients receiving regular reviews and having confidence in self-management and reporting high-quality care. Conclusions This extensive patient and healthcare provider survey emphasises the importance of aspects of care less often measured by clinicians, such as communication, shared decision-making and provision of information, and demonstrates that IBD nurse specialists are crucial to meeting the needs of people living with IBD.This work was supported by Crohn's & Colitis UK.Published onlin

AI-based dimensional neuroimaging system for characterizing heterogeneity in brain structure and function in major depressive disorder:COORDINATE-MDD consortium design and rationale

BACKGROUND: Efforts to develop neuroimaging-based biomarkers in major depressive disorder (MDD), at the individual level, have been limited to date. As diagnostic criteria are currently symptom-based, MDD is conceptualized as a disorder rather than a disease with a known etiology; further, neural measures are often confounded by medication status and heterogeneous symptom states. METHODS: We describe a consortium to quantify neuroanatomical and neurofunctional heterogeneity via the dimensions of novel multivariate coordinate system (COORDINATE-MDD). Utilizing imaging harmonization and machine learning methods in a large cohort of medication-free, deeply phenotyped MDD participants, patterns of brain alteration are defined in replicable and neurobiologically-based dimensions and offer the potential to predict treatment response at the individual level. International datasets are being shared from multi-ethnic community populations, first episode and recurrent MDD, which are medication-free, in a current depressive episode with prospective longitudinal treatment outcomes and in remission. Neuroimaging data consist of de-identified, individual, structural MRI and resting-state functional MRI with additional positron emission tomography (PET) data at specific sites. State-of-the-art analytic methods include automated image processing for extraction of anatomical and functional imaging variables, statistical harmonization of imaging variables to account for site and scanner variations, and semi-supervised machine learning methods that identify dominant patterns associated with MDD from neural structure and function in healthy participants. RESULTS: We are applying an iterative process by defining the neural dimensions that characterise deeply phenotyped samples and then testing the dimensions in novel samples to assess specificity and reliability. Crucially, we aim to use machine learning methods to identify novel predictors of treatment response based on prospective longitudinal treatment outcome data, and we can externally validate the dimensions in fully independent sites. CONCLUSION: We describe the consortium, imaging protocols and analytics using preliminary results. Our findings thus far demonstrate how datasets across many sites can be harmonized and constructively pooled to enable execution of this large-scale project

The rehabilitation of face recognition impairments: A critical review and future directions

While much research has investigated the neural and cognitive characteristics of face recognition impairments (prosopagnosia), much less work has examined their rehabilitation. In this paper, we present a critical analysis of the studies that have attempted to improve face-processing skills in acquired and developmental prosopagnosia, and place them in the context of the wider neurorehabilitation literature. First, we examine whether neuroplasticity within the typical face-processing system varies across the lifespan, in order to examine whether timing of intervention may be crucial. Second, we examine reports of interventions in acquired prosopagnosia, where training in compensatory strategies has had some success. Third, we examine reports of interventions in developmental prosopagnosia, where compensatory training in children and remedial training in adults have both been successful. However, the gains are somewhat limited-compensatory strategies have resulted in labored recognition techniques and limited generalization to untrained faces, and remedial techniques require longer periods of training and result in limited maintenance of gains. Critically, intervention suitability and outcome in both forms of the condition likely depends on a complex interaction of factors, including prosopagnosia severity, the precise functional locus of the impairment, and individual differences such as age. Finally, we discuss future directions in the rehabilitation of prosopagnosia, and the possibility of boosting the effects of cognitive training programmes by simultaneous administration of oxytocin or non-invasive brain stimulation. We conclude that future work using more systematic methods and larger participant groups is clearly required, and in the case of developmental prosopagnosia, there is an urgent need to develop early detection and remediation tools for children, in order to optimize intervention outcome. © 2014 Bate and Bennetts