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1.
BMJ Open ; 14(5): e080480, 2024 May 16.
Article in English | MEDLINE | ID: mdl-38760042

ABSTRACT

BACKGROUND: Multidomain interventions in older adults offer the best opportunity to prevent, delay or reverse existing symptoms in the earlier stages of frailty and improve independence but can be costly, and difficult to deliver at scale. However, digital health interventions enable personalised care and empowerment through self-management of long-term conditions, used at any time and when combined with health coaching offer the potential to enhance well-being and facilitate the achievement of health-related goals. We aim to evaluate the feasibility and acceptability of a digital health platform for long-term disease management combined with health coaching for people living with mild-moderate frailty, targeting self-identified goals-activity, nutrition, mood, enhancing social engagement and well-being. METHODS AND ANALYSIS: This is a non-randomised feasibility, single-group, pretest/post-test study, using qualitative and quantitative methods. The digital health coaching intervention (DIALOR-DIgitAL cOaching for fRailty) has been developed for implementation to older adults, aged 65 years or older with mild to moderate frailty and diagnosis of one or more long-term health conditions in the community. Participants will receive 12 weeks of health coaching and have access to a mobile health platform for 6 months. The primary outcome measure is the acceptability and feasibility of DIALOR along with a range of secondary outcome measures (including frailty, functioning measures, quality of life, social engagement, diet quality and self-reported indicators) collected at baseline and at 6 months. The findings will inform whether a wider effectiveness trial is feasible and if so, how it should be designed. ETHICS AND DISSEMINATION: Ethical approval has been granted by the Southeast Scotland Research Ethics Committee 02 (reference: 22/SS/0064). Research findings will be disseminated in a range of different ways to engage different audiences, including publishing in open-access peer-reviewed journals, conference presentations, social media, dissemination workshop with patients, carers, and healthcare professionals and on institution websites.


Subject(s)
Feasibility Studies , Frail Elderly , Frailty , Mentoring , Primary Health Care , Humans , Aged , Mentoring/methods , Frailty/therapy , Telemedicine , Quality of Life , Male , Female , Aged, 80 and over , Self-Management/methods , Digital Health
2.
Sensors (Basel) ; 24(7)2024 Mar 29.
Article in English | MEDLINE | ID: mdl-38610409

ABSTRACT

Electrical impedance spectroscopy (EIS) has been proposed as a promising noninvasive method to differentiate healthy thyroid from parathyroid tissues during thyroidectomy. However, previously reported similarities in the in vivo measured spectra of these tissues during a pilot study suggest that this separation may not be straightforward. We utilise computational modelling as a method to elucidate the distinguishing characteristics in the EIS signal and explore the features of the tissue that contribute to the observed electrical behaviour. Firstly, multiscale finite element models (or 'virtual tissue constructs') of thyroid and parathyroid tissues were developed and verified against in vivo tissue measurements. A global sensitivity analysis was performed to investigate the impact of physiological micro-, meso- and macroscale tissue morphological features of both tissue types on the computed macroscale EIS spectra and explore the separability of the two tissue types. Our results suggest that the presence of a surface fascia layer could obstruct tissue differentiation, but an analysis of the separability of simulated spectra without the surface fascia layer suggests that differentiation of the two tissue types should be possible if this layer is completely removed by the surgeon. Comprehensive in vivo measurements are required to fully determine the potential for EIS as a method in distinguishing between thyroid and parathyroid tissues.


Subject(s)
Dielectric Spectroscopy , Thyroid Gland , Thyroid Gland/surgery , Pilot Projects , Computer Simulation , Electricity
3.
Cochrane Database Syst Rev ; 5: CD013088, 2023 05 23.
Article in English | MEDLINE | ID: mdl-37218645

ABSTRACT

BACKGROUND: Ageing populations globally have contributed to increasing numbers of people living with frailty, which has significant implications for use of health and care services and costs. The British Geriatrics Society defines frailty as "a distinctive health state related to the ageing process in which multiple body systems gradually lose their inbuilt reserves". This leads to an increased susceptibility to adverse outcomes, such as reduced physical function, poorer quality of life, hospital admissions, and mortality. Case management interventions delivered in community settings are led by a health or social care professional, supported by a multidisciplinary team, and focus on the planning, provision, and co-ordination of care to meet the needs of the individual. Case management is one model of integrated care that has gained traction with policymakers to improve outcomes for populations at high risk of decline in health and well-being. These populations include older people living with frailty, who commonly have complex healthcare and social care needs but can experience poorly co-ordinated care due to fragmented care systems. OBJECTIVES: To assess the effects of case management for integrated care of older people living with frailty compared with usual care. SEARCH METHODS: We searched CENTRAL, MEDLINE, Embase, CINAHL, Health Systems Evidence, and PDQ Evidence and databases from inception to 23 September 2022. We also searched clinical registries and relevant grey literature databases, checked references of included trials and relevant systematic reviews, conducted citation searching of included trials, and contacted topic experts. SELECTION CRITERIA: We included randomised controlled trials (RCTs) that compared case management with standard care in community-dwelling people aged 65 years and older living with frailty. DATA COLLECTION AND ANALYSIS: We followed standard methodological procedures recommended by Cochrane and the Effective Practice and Organisation of Care Group. We used the GRADE approach to assess the certainty of the evidence. MAIN RESULTS: We included 20 trials (11,860 participants), all of which took place in high-income countries. Case management interventions in the included trials varied in terms of organisation, delivery, setting, and care providers involved. Most trials included a variety of healthcare and social care professionals, including nurse practitioners, allied healthcare professionals, social workers, geriatricians, physicians, psychologists, and clinical pharmacists. In nine trials, the case management intervention was delivered by nurses only. Follow-up ranged from three to 36 months. We judged most trials at unclear risk of selection and performance bias; this consideration, together with indirectness, justified downgrading the certainty of the evidence to low or moderate. Case management compared to standard care may result in little or no difference in the following outcomes. • Mortality at 12 months' follow-up (7.0% in the intervention group versus 7.5% in the control group; risk ratio (RR) 0.98, 95% confidence interval (CI) 0.84 to 1.15; I2 = 11%; 14 trials, 9924 participants; low-certainty evidence) • Change in place of residence to a nursing home at 12 months' follow-up (9.9% in the intervention group versus 13.4% in the control group; RR 0.73, 95% CI 0.53 to 1.01; I2 = 0%; 4 trials, 1108 participants; low-certainty evidence) • Quality of life at three to 24 months' follow-up (results not pooled; mean differences (MDs) ranged from -6.32 points (95% CI -11.04 to -1.59) to 6.1 points (95% CI -3.92 to 16.12) when reported; 11 trials, 9284 participants; low-certainty evidence) • Serious adverse effects at 12 to 24 months' follow-up (results not pooled; 2 trials, 592 participants; low-certainty evidence) • Change in physical function at three to 24 months' follow-up (results not pooled; MDs ranged from -0.12 points (95% CI -0.93 to 0.68) to 3.4 points (95% CI -2.35 to 9.15) when reported; 16 trials, 10,652 participants; low-certainty evidence) Case management compared to standard care probably results in little or no difference in the following outcomes. • Healthcare utilisation in terms of hospital admission at 12 months' follow-up (32.7% in the intervention group versus 36.0% in the control group; RR 0.91, 95% CI 0.79 to 1.05; I2 = 43%; 6 trials, 2424 participants; moderate-certainty evidence) • Change in costs at six to 36 months' follow-up (results not pooled; 14 trials, 8486 participants; moderate-certainty evidence), which usually included healthcare service costs, intervention costs, and other costs such as informal care. AUTHORS' CONCLUSIONS: We found uncertain evidence regarding whether case management for integrated care of older people with frailty in community settings, compared to standard care, improved patient and service outcomes or reduced costs. There is a need for further research to develop a clear taxonomy of intervention components, to determine the active ingredients that work in case management interventions, and identify how such interventions benefit some people and not others.


Subject(s)
Delivery of Health Care, Integrated , Frailty , Aged , Humans , Case Management , Frailty/therapy , Health Personnel , Hospitalization
4.
Cancers (Basel) ; 15(7)2023 Mar 26.
Article in English | MEDLINE | ID: mdl-37046647

ABSTRACT

Neuroblastoma is the most common extra-cranial solid tumour in children. Despite multi-modal therapy, over half of the high-risk patients will succumb. One contributing factor is the one-size-fits-all nature of multi-modal therapy. For example, during the first step (induction chemotherapy), the standard regimen (rapid COJEC) administers fixed doses of chemotherapeutic agents in eight two-week cycles. Perhaps because of differences in resistance, this standard regimen results in highly heterogeneous outcomes in different tumours. In this study, we formulated a mathematical model comprising ordinary differential equations. The equations describe the clonal evolution within a neuroblastoma tumour being treated with vincristine and cyclophosphamide, which are used in the rapid COJEC regimen, including genetically conferred and phenotypic drug resistance. The equations also describe the agents' pharmacokinetics. We devised an optimisation algorithm to find the best chemotherapy schedules for tumours with different pre-treatment clonal compositions. The optimised chemotherapy schedules exploit the cytotoxic difference between the two drugs and intra-tumoural clonal competition to shrink the tumours as much as possible during induction chemotherapy and before surgical removal. They indicate that induction chemotherapy can be improved by finding and using personalised schedules. More broadly, we propose that the overall multi-modal therapy can be enhanced by employing targeted therapies against the mutations and oncogenic pathways enriched and activated by the chemotherapeutic agents. To translate the proposed personalised multi-modal therapy into clinical use, patient-specific model calibration and treatment optimisation are necessary. This entails a decision support system informed by emerging medical technologies such as multi-region sequencing and liquid biopsies. The results and tools presented in this paper could be the foundation of this decision support system.

5.
Int J Mol Sci ; 23(19)2022 Oct 06.
Article in English | MEDLINE | ID: mdl-36233185

ABSTRACT

Urothelium is a transitional, stratified epithelium that lines the lower urinary tract, providing a tight barrier to urine whilst retaining the capacity to stretch and rapidly resolve damage. The role of glycerophospholipids in urothelial barrier function is largely unknown, despite their importance in membrane structural integrity, protein complex assembly, and the master regulatory role of PPARγ in urothelial differentiation. We performed lipidomic and transcriptomic characterisation of urothelial differentiation, revealing a metabolic switch signature from fatty acid synthesis to lipid remodelling, including 5-fold upregulation of LPCAT4. LPCAT4 knockdown urothelial cultures exhibited an impaired proliferation rate but developed elevated trans-epithelial electrical resistances upon differentiation, associated with a reduced and delayed capacity to restitute barrier function after wounding. Specific reduction in 18:1 PC fatty acyl chains upon knockdown was consistent with LPCAT4 specificity, but was unlikely to elicit broad barrier function changes. However, transcriptomic analysis of LPCAT4 knockdown supported an LPC-induced reduction in DAG availability, predicted to limit PKC activity, and TSPO abundance, predicted to limit endogenous ATP. These phenotypes were confirmed by PKC and TSPO inhibition. Together, these data suggest an integral role for lipid mediators in urothelial barrier function and highlight the strength of combined lipidomic and transcriptomic analyses for characterising tissue homeostasis.


Subject(s)
1-Acylglycerophosphocholine O-Acyltransferase , PPAR gamma , Urothelium , 1-Acylglycerophosphocholine O-Acyltransferase/genetics , Adenosine Triphosphate/metabolism , Cell Differentiation/genetics , Energy Metabolism , Fatty Acids/metabolism , Glycerophospholipids/metabolism , Humans , Lipids , PPAR gamma/genetics , PPAR gamma/metabolism , Receptors, GABA/metabolism , Urothelium/metabolism
6.
BMJ Lead ; 6(2): 110-117, 2022 06.
Article in English | MEDLINE | ID: mdl-36170537

ABSTRACT

BACKGROUND: Even though women outnumber men enrolled in medical school, making up 59% of entrants in the UK, they are significantly under-represented in academic medicine and senior positions. In the UK, 28.6% of academics overall are women. In the USA, while 51% of instructors are women, only 20% make it through the 'leaky pipeline' to become professors. One attributable factor is work-family conflict. The purpose of this study is to gain a deeper understanding of the relationship between work-family conflict and women's career progression in academic medicine, and to provide a model to inform and change perceptions and practice in order to improve the 'leaky pipeline'. METHODS: A systematic literature search was performed to identify qualitative studies which investigated this relationship. Studies were critically appraised, and data were analysed using thematic analysis. Themes identified in the data were used to develop a model to build on the understanding of this issue. FINDINGS: The findings of this research highlighted two main themes, one related to perceptions of gender (intrinsic or extrinsic), the way it impacts on work-family conflict and its relationship to women's career progression. The second theme relates to structures which hinder or support women's ability to have work-life balance. A model was developed that represents the inter-relationship between these factors. INTERPRETATION: Changes in both organisational culture and individuals' perception in regard to gender roles, especially of those in leadership, are necessary to create an environment where the best talent in academic medicine is selected regardless of gender.


Subject(s)
Career Mobility , Faculty, Medical , Family Conflict , Female , Humans , Leadership , Male , Schools, Medical
7.
Sensors (Basel) ; 22(15)2022 Aug 08.
Article in English | MEDLINE | ID: mdl-35957472

ABSTRACT

A multiscale modelling approach has been applied to the simulation of the electrical properties of oral tissue, for the purpose of informing an electrical impedance-based method of oral potential malignant disorder (OPMD) diagnosis. Finite element models of individual cell types, with geometry informed by histological analysis of human oral tissue (normal, hyperplastic and dysplastic), were generated and simulated to obtain electrical parameters. These were then used in a histology-informed tissue scale model, including the electrode geometry of the ZedScan tetrapolar impedance-measurement device. The simulations offer insight into the feasibility of distinguishing moderate dysplasia from severe dysplasia or healthy tissue. For some oral sites, simulated spectra agreed with real measurements previously collected using ZedScan. However, similarities between simulated spectra for dysplastic, keratinised and non-dysplastic but hyperkeratinised tissue suggest that significant keratinisation could cause some OPMD tissues to exhibit larger than expected impedance values. This could lead to misidentification of OPMD spectra as healthy. Sources of uncertainty within the models were identified and potential remedies proposed.


Subject(s)
Dielectric Spectroscopy , Mouth Neoplasms , Computer Simulation , Electric Impedance , Electrodes , Humans , Mouth Neoplasms/diagnosis
8.
J Theor Biol ; 547: 111173, 2022 08 21.
Article in English | MEDLINE | ID: mdl-35644484

ABSTRACT

Solid tumour growth depends on a host of factors which affect the cell life cycle and extracellular matrix vascularization that leads to a favourable environment. The whole solid tumour can either grow or wither in response to the action of the immune system and therapeutics. A personalised mathematical model of such behaviour must consider both the intra- and inter-cellular dynamics and the mechanics of the solid tumour and its microenvironment. However, such wide range of spatial and temporal scales can hardly be modelled in a single model, and require the so-called multiscale models, defined as orchestrations of single-scale component models, connected by relation models that transform the data for one scale to another. While multiscale models are becoming common, there is a well-established engineering approach to the definition of the scale separation, e.g., how the spatiotemporal continuum is split in the various component models. In most studies scale separation is defined as natural, linked to anatomical concepts such as organ, tissue, or cell; but these do not provide reliable definition of scales: for examples skeletal organs can be as large as 500 mm (femur), or as small as 3 mm (stapes). Here we apply a recently proposed scale-separation approach based on the actual experimental and computational limitations to a patient-specific model of the growth of neuroblastoma. The resulting multiscale model can be properly informed with the available experimental data and solved in a reasonable timeframe with the available computational resources.


Subject(s)
Models, Biological , Neoplasms , Cell Physiological Phenomena , Computer Simulation , Extracellular Matrix/metabolism , Humans , Neoplasms/pathology , Neovascularization, Pathologic/pathology , Tumor Microenvironment
9.
Eur Radiol Exp ; 6(1): 29, 2022 07 01.
Article in English | MEDLINE | ID: mdl-35773546

ABSTRACT

A huge amount of imaging data is becoming available worldwide and an incredible range of possible improvements can be provided by artificial intelligence algorithms in clinical care for diagnosis and decision support. In this context, it has become essential to properly manage and handle these medical images and to define which metadata have to be considered, in order for the images to provide their full potential. Metadata are additional data associated with the images, which provide a complete description of the image acquisition, curation, analysis, and of the relevant clinical variables associated with the images. Currently, several data models are available to describe one or more subcategories of metadata, but a unique, common, and standard data model capable of fully representing the heterogeneity of medical metadata has not been yet developed. This paper reports the state of the art on metadata models for medical imaging, the current limitations and further developments, and describes the strategy adopted by the Horizon 2020 "AI for Health Imaging" projects, which are all dedicated to the creation of imaging biobanks.


Subject(s)
Artificial Intelligence , Metadata , Algorithms , Biological Specimen Banks , Diagnostic Imaging/methods
10.
Clin Psychol Psychother ; 29(6): 1843-1853, 2022 Nov.
Article in English | MEDLINE | ID: mdl-35726695

ABSTRACT

This scoping review considers 11 studies that have focussed on the effect of teaching the mindfulness element of Dialectical Behaviour Therapy (DBT) on clinical outcomes. These articles utilized either mindfulness skills as embedded into the full DBT-Skills programme or a stand-alone mindfulness skills module (DBT-M), as treatment for clinical populations. The review of the research found that clinical application of mindfulness as taught in DBT leads to increases in self-reported mindfulness-especially non-judgemental awareness along with psychological measures that suggests an increase in mindfulness, for example, improved attention. The studies demonstrated that an increase in mindfulness had a positive effect on some clinical symptoms such as symptoms of Borderline Personality Disorder. Not all of the studies controlled for the effect of group, amount of practice or other elements of DBT therapy. The findings suggest that more needs to be done to establish the underlying mechanisms of change when being taught mindfulness in DBT.


Subject(s)
Borderline Personality Disorder , Dialectical Behavior Therapy , Mindfulness , Humans , Treatment Outcome , Borderline Personality Disorder/therapy , Borderline Personality Disorder/psychology , Attention
11.
JMIR Res Protoc ; 11(4): e27207, 2022 Apr 13.
Article in English | MEDLINE | ID: mdl-35416780

ABSTRACT

BACKGROUND: Cochlear implants provide hearing to approximately 750,000 people with deafness worldwide; these patients require lifelong follow-up. Care for adults with implants in the United Kingdom occurs at one of 19 centers, which may be far from the patients' homes. In a previous randomized controlled trial, we successfully introduced person-centered care. We designed, implemented, and evaluated the following remote care pathway: a personalized web-based support tool, home hearing check, self-device adjustment, and upgrading of sound processors at home rather than in the clinic. The remote care group had a significant increase in empowerment after using the tools, and the patients and clinicians were keen to continue. We would now like to scale up these improvements as an option for >12,000 UK adults using implants; we are commissioning an independent evaluation of this intervention and rollout to establish if it achieves its aims of more empowered and confident patients; more accessible and equitable care; stable hearing; more efficient, person-centered, and scalable service; and more satisfied and engaged patients and clinicians. OBJECTIVE: This study aims to evaluate the impact and rollout of a person-centered clinical care pathway via telemedicine for adults with cochlear implants in the United Kingdom, using both outcomes and process evaluation. METHODS: This project will scale up and evaluate a person-centered long-term follow-up pathway for adults using cochlear implants through a personalized website, including a home hearing check, uploading photos of cochlear implant site, listening in noise and music practice, ordering of spares, questionnaires, and other resources. Both quantitative and qualitative analyses will be conducted, and they will be both an outcome and process evaluation. RESULTS: As of July 2021, the trial is closed, and all data collection is complete. The evaluation report is expected to be published in December 2021, and the research data have not yet been analyzed. CONCLUSIONS: This project will present the results of the first scaling up of a remote care pathway for adults with cochlear implants in the United Kingdom. TRIAL REGISTRATION: International Standard Randomized Controlled Trial Number ISRCTN51668922; https://www.isrctn.com/ISRCTN51668922. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/27207.

12.
BMC Complement Med Ther ; 20(1): 363, 2020 Nov 23.
Article in English | MEDLINE | ID: mdl-33228697

ABSTRACT

OBJECTIVES: To determine similarities and differences in the reasons for using or not using complementary and alternative medicine (CAM) amongst general and condition-specific populations, and amongst populations in each region of the globe. METHODS: A literature search was performed on Pubmed, ScienceDirect and EMBASE. KEYWORDS: 'herbal medicine' OR 'herbal and dietary supplement' OR 'complementary and alternative medicine' AND 'reason' OR 'attitude'. Quantitative or qualitative original articles in English, published between 2003 and 2018 were reviewed. Conference proceedings, pilot studies, protocols, letters, and reviews were excluded. Papers were appraised using valid tools and a 'risk of bias' assessment was also performed. Thematic analysis was conducted. Reasons were coded in each paper, then codes were grouped into categories. If several categories reported similar reasons, these were combined into a theme. Themes were then analysed using χ2 tests to identify the main factors related to reasons for CAM usage. RESULTS: 231 publications were included. Reasons for CAM use amongst general and condition-specific populations were similar. The top three reasons for CAM use were: (1) having an expectation of benefits of CAM (84% of publications), (2) dissatisfaction with conventional medicine (37%) and (3) the perceived safety of CAM (37%). Internal health locus of control as an influencing factor was more likely to be reported in Western populations, whereas the social networks was a common factor amongst Asian populations (p < 0.05). Affordability, easy access to CAM and tradition were significant factors amongst African populations (p < 0.05). Negative attitudes towards CAM and satisfaction with conventional medicine (CM) were the main reasons for non-use (p < 0.05). CONCLUSIONS: Dissatisfaction with CM and positive attitudes toward CAM, motivate people to use CAM. In contrast, satisfaction with CM and negative attitudes towards CAM are the main reasons for non-use.


Subject(s)
Complementary Therapies/statistics & numerical data , Global Health , Health Knowledge, Attitudes, Practice , Humans , Patient Satisfaction , Surveys and Questionnaires
13.
Int J Audiol ; 59(12): 905-914, 2020 12.
Article in English | MEDLINE | ID: mdl-32678998

ABSTRACT

OBJECTIVE: To develop a manualised psychological treatment for tinnitus that could enhance audiologist usual care, and to test feasibility of evaluating it in a randomised controlled trial. DESIGN: Feasibility trial, random allocation of patients to manualised treatment or treatment as usual, and mixed-methods evaluation. Study sample: Senior audiologists, and adults with chronic tinnitus. RESULTS: Recruitment reached 63% after 6 months (feasibility pre-defined as 65%). Only nine patients (47%) were retained for the duration of the trial. Patients reported that the treatment was acceptable and helped reassure them about their tinnitus. Audiologists reported mixed feelings about the kinds of techniques that are presented to them as 'psychologically informed'. Audiologists also reported lacking confidence because the training they had was brief, and stated that more formal supervision would have been helpful to check adherence to the treatment manual. CONCLUSIONS: The study indicate potential barriers to audiologist use of the manual, and that a clinical trial of the intervention is not yet feasible. However, positive indications from outcome measures suggest that further development work would be worthwhile. Refinements to the manual are indicated, and training and supervision arrangements to better support audiologists to use the intervention in the clinic are required. Trial Registration: ISRCTN13059163.


Subject(s)
Audiologists , Tinnitus , Adult , Feasibility Studies , Humans , Tinnitus/diagnosis , Tinnitus/therapy
14.
Eur Radiol Exp ; 4(1): 22, 2020 04 03.
Article in English | MEDLINE | ID: mdl-32246291

ABSTRACT

PRIMAGE is one of the largest and more ambitious research projects dealing with medical imaging, artificial intelligence and cancer treatment in children. It is a 4-year European Commission-financed project that has 16 European partners in the consortium, including the European Society for Paediatric Oncology, two imaging biobanks, and three prominent European paediatric oncology units. The project is constructed as an observational in silico study involving high-quality anonymised datasets (imaging, clinical, molecular, and genetics) for the training and validation of machine learning and multiscale algorithms. The open cloud-based platform will offer precise clinical assistance for phenotyping (diagnosis), treatment allocation (prediction), and patient endpoints (prognosis), based on the use of imaging biomarkers, tumour growth simulation, advanced visualisation of confidence scores, and machine-learning approaches. The decision support prototype will be constructed and validated on two paediatric cancers: neuroblastoma and diffuse intrinsic pontine glioma. External validation will be performed on data recruited from independent collaborative centres. Final results will be available for the scientific community at the end of the project, and ready for translation to other malignant solid tumours.


Subject(s)
Artificial Intelligence , Biomarkers/analysis , Brain Neoplasms/diagnostic imaging , Brain Neoplasms/therapy , Glioma/diagnostic imaging , Glioma/therapy , Neuroblastoma/diagnostic imaging , Neuroblastoma/therapy , Child , Cloud Computing , Decision Support Techniques , Disease Progression , Europe , Female , Humans , Male , Phenotype , Prognosis , Tumor Burden
15.
Arch Dis Child ; 105(7): 671-676, 2020 07.
Article in English | MEDLINE | ID: mdl-31937567

ABSTRACT

OBJECTIVE: Chronic diseases, such as inflammatory bowel disease (IBD), can impact negatively on education and social development. Examining the impact of IBD on school/college attendance for children and young people (CYP) is vital to provide targeted support to patients, families and schools. METHODS: We performed a cross-sectional survey to determine the school/college attendance rates, the reasons for absence related to IBD and facilitators or barriers to school/college attendance. In a subset of patients followed up locally, we performed a detailed review of hospital attendance data to assess healthcare burden. RESULTS: Two hundred and thirty-one questionnaires were given to CYP with IBD aged 5-17 years. Response rate was 74% (final sample 169). The median school/college attendance rate was 92.5%, significantly lower than all children in England (95.2%). 39.6% of children with IBD were persistently absent, defined nationally as missing 10% or more of school. Only five children (3%) had a 100% attendance record. Increasing age and use of monoclonal therapy were predictors of poor school attendance. Concerns about feeling unwell at school/college, access to toilets, keeping up with work and teachers' understanding of IBD are the main issues for CYP with IBD. There was a significant negative correlation between number of days in hospital and school attendance. CONCLUSION: IBD has a significant impact on school/college attendance, with hospital attendance, disease burden and school difficulties being major factors. Employing strategies to minimise healthcare burden and developing a partnership between health and education to support children with IBD will serve to facilitate school/college attendance.


Subject(s)
Antibodies, Monoclonal/therapeutic use , Education/statistics & numerical data , Inflammatory Bowel Diseases/epidemiology , Schools , Adolescent , Age Factors , Child , Child, Preschool , Comprehension , Cross-Sectional Studies , England/epidemiology , Faculty/psychology , Health Status , Humans , Inflammatory Bowel Diseases/drug therapy , Length of Stay/statistics & numerical data , Surveys and Questionnaires , Toilet Facilities
16.
Inf Commun Soc ; 22(7): 1012-1028, 2019.
Article in English | MEDLINE | ID: mdl-31787840

ABSTRACT

Environmental data justice (EDJ) emerges from conversations between data justice and environmental justice while identifying the limits and tensions of these lenses. Through a reflexive process of querying our entanglement in non-innocent relations, this paper develops and engages EDJ by examining how it informs the work of the Environmental Data & Governance Initiative (EDGI), a distributed, consensus-based organization that formed in response to the 2016 US presidential election. Through grassroots archiving of data sets, monitoring federal environmental and energy agency websites, and writing rapid-response reports about how federal agencies are being undermined, EDGI mobilises EDJ to challenge the 'extractive logic' of current federal environmental policy and data infrastructures. 'Extractive logic' disconnects data from provenance, privileges the matrix of domination, and whitewashes data to generate uncertainty. We use the dynamic EDJ framework to reflect on EDGI's public comment advising against the US Environmental Protection Agency's proposed rule for Transparent Science. Through EDJ, EDGI aspires to create new environmental data infrastructures and practices that are participatory and embody equitable, transparent data care.

17.
Clin Rehabil ; 33(12): 1919-1930, 2019 Dec.
Article in English | MEDLINE | ID: mdl-31423822

ABSTRACT

OBJECTIVE: To establish feasibility of initiating electrical stimulation treatment of wrist extensors and flexors in patients early after stroke to prevent muscle contractures and pain. DESIGN: Feasibility randomized controlled trial with economic evaluation. SETTING: A specialist stroke unit in Nottinghamshire. SUBJECTS: A total of 40 patients recruited within 72 hours post-stroke with arm hemiparesis. INTERVENTIONS: Participants were randomized to receive usual care or usual care and electrical stimulation to wrist flexors and extensors for 30 minutes, twice a day, five days a week for three months. Initial treatment was delivered by an occupational therapist or physiotherapist who trained participants to self-manage subsequent treatments. MEASURES: Measures of feasibility included recruitment and attrition rates, completion of treatment, and successful data collection. Outcome data on wrist range of motion, pain, arm function, independence, quality of life, and resource use were measured at 3-, 6-, and 12-months post-randomization. RESULTS: A total of 40 participants (of 215 potentially eligible) were recruited in 15 months (20 men; mean age: 72 (SD: 13.0)). Half the participants lacked mental capacity and were recruited by consultee consent. Attrition at three-month follow-up was 12.5% (death (n = 2), end-of-life care (n = 2), and unable to contact (n = 1)). Compliance varied (mean: 65 (SD: 53)) and ranged from 10 to 166 treatments per patient (target dosage was 120). Data for a valid economic analysis can be adequately collected. CONCLUSION: Early initiation of electrical stimulation was acceptable and feasible. Data collection methods used were feasible and acceptable to participants. A large definitive study is needed to determine if electrical stimulation is efficacious and cost effective.


Subject(s)
Contracture/prevention & control , Electric Stimulation Therapy , Pain/prevention & control , Paresis/rehabilitation , Stroke/complications , Wrist , Adult , Aged , Aged, 80 and over , Contracture/etiology , Feasibility Studies , Female , Humans , Male , Middle Aged , Pain/etiology , Paresis/etiology , Quality of Life , Range of Motion, Articular , Stroke Rehabilitation
18.
BMC Med ; 17(1): 54, 2019 03 04.
Article in English | MEDLINE | ID: mdl-30827280

ABSTRACT

BACKGROUND: Managing hearing communication for residents living with hearing loss and dementia in long-term care settings is challenging. This paper explores how care can be effective in optimising hearing communication for residents living with dementia. We argue that the underlying notion of permission or authorisation allows care staff to do what they know will be effective in providing person-centred care that enhances hearing communication. The paper also indicates that this notion of permission can usefully be applied to other areas of care home practice. METHODS: To address hearing-related communication in care homes, we conducted a realist synthesis (RS). As a theory-driven approach to reviewing literature, it also uses expert opinion to understand complex health situations. Using RS, we developed a theory surrounding the management of hearing-related communication in care homes. Applying formal processes to the literature search and data extraction, the analysis uncovered relevant mechanisms and contexts to help confirm, refute or refine our understanding of how hearing communication could be improved. RESULTS: Forty-three papers were selected for the realist synthesis. The documents were analysed to construct five context-mechanism-outcome configurations (CMOCs). The CMOCs represent possible care interventions to optimise hearing-related communication in care homes for person living with dementia and hearing loss (PLWDHL). They include leadership promoting positive regard and empathy through person-centred care, communication training for staff, 'knowing the person' and relationship building for responsive awareness of residents' hearing needs, maintaining and monitoring hearing communication through care planning, and managing noise in the care home environment. CONCLUSIONS: Leadership that provides appropriate training and resources is likely to enhance knowledge and skills, leading to staff feeling able and equipped to respond to the hearing-related communication needs of PLWDHL. Collaboration with local hearing services is likely to raise awareness of hearing loss among care home staff. Importantly, care staff require a sense of permission from leadership, to work with knowledge and autonomy in the interest of residents living with dementia and hearing loss.


Subject(s)
Delivery of Health Care/methods , Dementia/psychology , Hearing Loss/psychology , Nursing Homes/trends , Communication , Humans
19.
Front Psychiatry ; 10: 952, 2019.
Article in English | MEDLINE | ID: mdl-31998164

ABSTRACT

Objective: To examine the feasibility of conducting a fully powered randomized controlled trial (RCT) of Individual Placement and Support (IPS). IPS is a form of supported employment which aims to put people into open employment quickly and in accordance with their preferences. It is delivered by employment specialists collocated within clinical teams, and provides time unlimited support for the individual and their employer, along with welfare benefits counselling. Method: A feasibility cluster RCT of treatment as usual (TAU) plus IPS versus TAU alone was conducted over 12 months among patients with offending histories in a community forensic setting in the UK. The feasibility criteria were to achieve 50% recruitment rate; 50% completion rate for IPS; 50% completion rate of all outcome measures; and 80% acceptability rating for IPS. The primary efficacy outcome was the proportion of people in open employment at 12 months. The secondary outcomes were other vocational and educational activities; Brief Psychiatric Rating Scale; Rosenberg's Self-esteem Scale; Client Service Receipt Inventory; quality of life using the SF12-v2 and EQ5-D3; Social Functioning Questionnaire; Work Limitation Questionnaire; and reoffending. Results: Participants' mean age was 39.2 years. The majority were male (88.9), White British (72.2), and single (72.2%). Over 72% had no higher qualification beyond secondary education; mean years in education was 10.4. Over one third had schizophrenia, one fifth had depression, and the rest had personality disorder as their primary diagnosis. Participants had a lifetime average of 7.5 convictions for 15.5 offences. The recruitment rate of all referrals was 38.3% (IPS n = 11; TAU n = 7). Completion rate for IPS was 54.5, with 45.5% acceptability rating. Completion rates for outcome measures for the groups at baseline and 12 months ranged from 22.2 to 100%. The proportion of people in open employment at 12 months were 9.1 and 0% for IPS and TAU respectively. Conclusion: It is not feasible to conduct a full RCT of IPS in community forensic settings in the UK owing to recruitment and retention difficulties. Conducting a trial of this kind requires a large pool of patients from multiple sites and longer IPS implementation and recruitment periods than those of this study. Clinical Trial Registration: www.ClinicalTrials.gov, identifier NCT02442193.

20.
Mobilization ; 23(4): 511-529, 2018 Dec.
Article in English | MEDLINE | ID: mdl-32395066

ABSTRACT

The dismantlement of evidence-based environmental governance by the Trump Administration requires new forms of activism that uphold science and environmental regulatory agencies while critiquing the politics of knowledge production. The Environmental Data and Governance Initiative (EDGI) emerged after the November 2016 U.S. Presidential elections, becoming an organization of over 175 volunteer researchers, technologists, archivists, and activists innovating more just forms of government accountability and environmental regulation. Our successes include: 1) leading a public movement to archive vulnerable federal data evidencing climate change and environmental injustice; 2) conducting multi-sited interviews of current and former federal agency personnel regarding the transition into the Trump administration; 3) tracking changes to federal websites. In this article, we conduct a "social movement organizational autoethnography" on the field of movements intersecting within EDGI and on our theory, tactics, and practices. We offer ideas for expanding and iterating on methods of public, collaborative scholarship and advocacy.

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