239 research outputs found

    The development and initial validation of an outcome measure for children and young people with life-limiting and life-threatening conditions

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    BackgroundThere is no validated outcome measure for use in children's palliative care outside of sub-Saharan Africa. Development of such a measure is required to realise the benefits of patient-centred outcome measure use that has been demonstrated in adult palliative care. Previous research into what is important to children and young people with life-limiting and life-threatening conditions has primarily focused on those with a cancer diagnosis. Much of this pre-existing research focuses on the perspectives of proxies, rather than those of the child or young person.AimTo develop an outcome measure, the children's palliative outcome scale (C-POS), for use by children and young people with life-limiting and life-threatening conditions and their families, and to establish face and content validity, comprehensiveness, comprehensibility, feasibility, and acceptability of use.MethodsA sequential mixed-methods study was conducted in three phases, following the principles of patient-reported outcome measurement design described by Rothrock and the Consensus-based Standards for the selection of health Measurement Instruments (COSMIN).Phase 1 - gathering inputA systematic review was conducted with the aim of appraising the evidence on optimal recall period, response format and mode of administration to enable children and young people to participate in self-reporting on their health outcomes. A young person's advisory group was also consulted on the same topic.To inform face and content validity of C-POS a semi-structured qualitative interview study was conducted to seek the perspectives of children and young people, their parents/carers and siblings, health care professionals and NHS commissioners on priority symptoms, concerns, and care priorities. Participants were also asked to identify their preferences for the design of C-POS, in terms of recall period, response scale format and administration mode.Phase 2 - item generationPart 1: Parents and professionals with experience in caring for a child or young person with a life-limiting or life-threatening condition participated in a three-round modified ranking-type Delphi survey with the aim of establishing which outcomes identified in phase 1 of this thesis should be included in C-POS.Part 2: The young personā€™s advisory group were asked to select their priority outcomes from the items ranked in rounds 2 and 3 of the Delphi survey.Part 3: An item generation meeting was conducted with key stakeholders to develop initial C-POS versions based on the evidence collected so far.Phase 3 - item improvementCross-sectional cognitive interview study to establish acceptability, comprehensiveness, and comprehension of the initial C-POS versions within the target population.ResultsPhase 1 - gathering inputSystematic review: Findings showed that children under five years old cannot validly and reliably self-report health outcomes. Face scales demonstrated better psychometric properties than visual analogue or Likert scales. Computerised and paper scales generally show equivalent construct validity and children prefer computerised measures. Children seven years old and younger often think dichotomously so may need two response options. Those over eight years old can reliably use a three-point scale.Qualitative interview study: 106 participants were recruited: 26 children, 40 parents, 13 siblings, 15 health care professionals and 12 commissioners. Children found a short recall period and a visually appealing measure with 10 questions or fewer most acceptable. Children with life-limiting conditions were more familiar with using rating scales such as numeric and Likert than their healthy siblings and emphasised the importance of completing the measure alongside interactions with a healthcare professional. Parents assumed that electronic completion methods would be most feasible and acceptable but a small number of children preferred paper measures.Participants described many inter-related symptoms, concerns and care priorities impacting on all aspects of life. Data revealed an overarching theme of pursuing ā€˜normalityā€™, described as childrenā€™s desire to undertake usual childhood activities. Parents need support with practical aspects of care to help realise this desire for normality.Phase 2 - item generationPart 1: Delphi survey (n=82). Ranking agreement between participants increased over the rounds, indicating movement towards consensus. Agreement between professional and parent ranking was poor. Professionals prioritised physical symptoms, whereas parents prioritised psychosocial and practical concerns.Part 2: 22 children and young people attended the young person's advisory group. They prioritised items related to living a ā€˜normal lifeā€™ such as seeing friends and attending school, in addition to items prioritised by the adult participants in the Delphi survey.Part 3: 22 participants attended the item generation meeting. Fiveage/developmental stage appropriPhase 3 - item improvementForty-eight individuals participated (36 parents; 12 children) in cognitive testing of the C-POS versions. This revealed challenges in the acceptability of some items for parents of non-verbal children and refinements were made. C-POS content and length were acceptable, and all questions were considered important. Parents reported that completing a measure that asks about what matters may be distressing but this is anticipated and acceptable.ConclusionsThis thesis demonstrates the development of the first UK patient-centred outcome measure for use with children and young people with life-limiting and life-threatening conditions and their families. By following established methodological criteria for patient-centred outcome measure development this thesis demonstrates that CPOS has robust face and content validity and is feasible and acceptable for use within the target population.</div

    30th European Congress on Obesity (ECO 2023)

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    This is the abstract book of 30th European Congress on Obesity (ECO 2023

    Mobile Apps to Improve Brace-Wearing Compliance in Patients with Idiopathic Scoliosis: A Quality Analysis, Functionality Review and Future Directions

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    This study was performed to review which mHealth apps that improve brace-wearing compliance are currently available, and to carry out their quality assessments by listing their functionalities. We found ten mHealth apps in the literature review and commercial mHealth apps market (Google Play and App store). Then, the quality of these apps was evaluated by their transparency, health content, excellent technical content, security/privacy, issues of usability, and subjective ratings (THESIS) scale, and the functionalities of the included apps were reviewed. Regarding these functionalities, four categories (data acquisition, compliance enhancement, educational components, and additional functionalities) and twelve subcategories were identified. The mean overall quality of the apps was 3.00 out of 5. Although four of the apps achieved a score of 3.0 or more for their overall quality, indicating an acceptable quality, none of the apps scored higher than 4.0, which indicated a high or excellent quality. According to the sections, the transparency section had the highest rating (3.92) and the security/privacy section received the lowest rating (2.02). Given that the overall quality of current mHealth apps was not high, and their potential to motivate patients with idiopathic scoliosis to adhere to their bracing treatment, it is necessary to develop high-quality apps with appropriate functionalities for supporting brace treatment.ope

    Design and Administration of Patient-Centred Outcome Measures: The Perspectives of Children and Young People with Life-Limiting or Life-Threatening Conditions and Their Family Members

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    BACKGROUND: Self-reported health data from children with life-limiting conditions is rarely collected. To improve acceptability and feasibility of child and family-centred outcome measures for children, they need to be designed in a way that reflects preferences, priorities and abilities. OBJECTIVES: The aim was to identify preferences for patient-reported outcome measure design (recall period, response format, length, administration mode) to improve the feasibility, acceptability, comprehensibility and relevance of a child and family-centred outcome measure, among children with life-limiting conditions and their family members. METHOD: A semi-structured qualitative interview study seeking the perspectives of children with life-limiting conditions, their siblings and parents on measure design was conducted. Participants were purposively sampled and recruited from nine UK sites. Verbatim transcripts were analysed using framework analysis. RESULTS: A total of 79 participants were recruited: 39 children aged 5ā€“17 years (26 living with a life-limiting condition; 13 healthy siblings) and 40 parents (of children aged 0ā€“17 years). Children found a short recall period and a visually appealing measure with ten questions or fewer most acceptable. Children with life-limiting conditions were more familiar with using rating scales such as numeric and Likert than their healthy siblings. Children emphasised the importance of completing the measure alongside interactions with a healthcare professional to enable them to talk about their responses. While parents assumed that electronic completion methods would be most feasible and acceptable, a small number of children preferred paper. CONCLUSIONS: This study demonstrates that children with life-limiting conditions can engage in communicating preferences regarding the design of a patient-centred outcome measure. Where possible, children should be given the opportunity to participate in the measure development process to enhance acceptability and uptake in clinical practice. Results of this study should be considered in future research on outcome measure development in children

    A review of the effects of mindfulness meditation on chronic pain in older adults

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    Pain is a biopsychosocial phenomenon, which draws from physiological responses as well as cultural and social context and mental states. Pain is most frequently treated through surgical and pharmacological interventions, which can be costly and time-consuming, especially when treating chronic pain. Older adults suffer from chronic pain at a higher rate than the rest of the population, and more accessible interventions are desperately needed to help manage the experience of chronic pain. Mindfulness meditation is increasingly being utilized for management of pain due to evidence of its effectiveness, cheaper cost, and ability to be practiced outside of medical facilities. Prior research studies looked at the effectiveness of using mindfulness meditation to manage chronic pain, but a limited number have focused on older adults. This systematic review was conducted to examine the benefits of mindful meditation in managing chronic pain in older adults. Eight studies were included and narrative synthesis was used to demonstrate that while mindful meditation does not appear to reduce pain intensity, it may help manage chronic pain in older adults by changing the relationship to pain, which in turn may reduce functional impairment and negative emotions, and improve quality of life. Clinical applications are discussed

    Investigation Into the Physical Environmental Correlates of Aggressive Behaviour in Children with Neurodevelopmental Disorders (NDDs)

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    Background: Physical environmental influences on childhood aggression in children with neurodevelopmental disabilities is a severely under-researched research locus. The aim of this doctorate was to elucidate specific associations between childrenā€™s developmental environment and aggressive behaviours, using this evidence to reciprocally inform an experimental psychology project to investigate underlying mechanisms. To explore these effects, the programme of study was broadly divided into three reflexive workstreams using diverse research methodologies. Methods: In the first workstream, I conducted a systematic review of the current literature examining physical environmental influences on childhood aggressive behaviours in both typically developing children (aged 0 ā€“ 18) and those diagnosed with NDDs. The literature on children with NDDs was substantially limited in comparison to peers without NDDs. The second workstream was comprised of a large-scale secondary data analysis (multiply imputed growth curve modelling) to investigate environmental influences on conduct problems across early development. I used data from the Millennium Cohort Study (MCS) to assess how physical environmental metrics, such as neighbourhood greenspace, air pollution, household crowding, and presence of home damp influenced the development and severity of conduct problems in children with (n=8013) and without NDDs (n=155) between the ages of 3 ā€“ 11 years. Finally, building upon evidence from the previous two workstreams, I designed a proof-of-principle psychological experiment to examine the influence of urban nature exposure on children with NDDs. Specifically, simulating a real-world urban greenspace using a Person-Environment-Activity Research Laboratory (PEARL). This facilitated the ability to manipulate and isolate individual environmental aspects of urban nature exposure (light, sound, and projection). Following ethical review and approval, I recruited 3 children (100% male) with mild and moderate intellectual disability aged between 12 ā€“ 15 years (Mean age = 14) attending a local school for children with special educational needs. We examined their physiological reactions to four simulated urban green space aspects (light, sound, landscape projections, and vegetation) against a baseline control condition. I also collected demographic information on parent reported aggressive behaviours, exposure to local greenspace(s), physical and mental health history, medication, and adaptive behaviours (ABAS-3). This research lays the foundation for future large scale experimental paradigms that can disentangle the effects of nature exposure in these children, with the aim of translating these findings into real world therapeutic design interventions and relevant policy changes to improve the quality of the built environment for these children. Findings: From articles retrieved from my systematic review I found evidence for the beneficial influences of nature in both populations, and simultaneously negative effects of both noise and air pollution in typically developing children only. Evidence for other environmental aspects such as crowding, music, urbanicity, meteorology, and interior design had either insufficient or inconsistent evidence to extrapolate concreate conclusions. More evidence on the effect of these exposures on child aggression outcomes is recommended. From the analysis of the MCS cohort I found various sociodemographic factors (ethnicity, sex, poverty, family structure, maternal distress) and internal residential conditions were associated with increased childhood conduct problem trajectories in both groups of children. I also discovered potential evidence of a moderating influence effect of intellectual disability on the relationship between spatial density and conduct problems. From the final experimental project, I report preliminary evidence for the influence of urban greenspaces to reduce physiological arousal in children with complex neurodisability profiles. Initial evidence for the hierarchical nature of urban greenspace sensorial aspects was reported, for example: that urban nature soundscapes maybe a more influential environmental stimuli than lighting or landscape projections. Conclusion: Drawing together multi-disciplinary research methodologies facilitated the ability to identify disparities in research examining physical environmental determinants of aggression in neurodiverse child populations. Reciprocally, the systematic review and secondary data analysis contributed incrementally to filling this lacuna of research. Using findings from these two work streams, I identified that exploring the potentially therapeutic influences of urban nature exposure on children with neurodevelopmental disorders may provide novel indicators of its aetiological mechanisms. I reported original findings supporting these research aims, elucidating the potential hierarchical nature of urban greenspace elements. This was also the first study of its kind reporting the potential for simulated urban park spaces to reduce physiological arousal in neurodivergent children with aggressive behavioural difficulties

    WiGlove : A Passive Dynamic Orthosis for Home-based Post-stroke Rehabilitation of Hand and Wrist

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    Stroke survivors often experience varying levels of motor function deficits in their hands affecting their ability to perform activities of daily life. Recovering their hand functions through neurorehabilitation is a significant step in their recovery towards independent living. Home-based rehabilitation using robotic devices allows stroke survivors to train at their convenience independent of factors such as the availability of therapistsā€™ appointments and the need for frequent travel to outpatient clinics. While many robotic solutions have been proposed to address the above concerns, most focus on training only the wrist or the fingers, neglecting the synergy between the two. To address this, the WiGlove was co-designed to allow hemiparetic stroke survivors to train both the wrist and fingers in the comfort of their homes. The central hypothesis of this work is to investigate if a device designed using user-centred methods featuring aspects of usability such as easy donning and doffing and wireless operation, can act as a feasible tool for home-based rehabilitation of the hand and wrist following stroke. In order to aid this investigation, we tackled this task in three stages of usability and feasibility evaluations. Firstly, healthy participants tried the current state of the art, the SCRIPT Passive Orthosis, as well as the WiGlove, in a counterbalanced, within-subject experiment and attested to WiGloveā€™s improvement in several aspects of usability such as ease of don/doffing, suitability for ADL, unblocked natural degrees of freedom, safety and aesthetic appeal. Subsequently, a heuristic evaluation with six stroke therapists validated these improvements and helped identify issues they perceived to potentially affect the deviceā€™s acceptance. Integrating this feedback, the updated WiGlove was subjected to a six-week summative feasibility evaluation with two stroke survivors, with varying levels of impairment, in their homes without supervision from the therapists. Results from this study were overwhelmingly positive on the usability and acceptance of the WiGlove. Furthermore, in the case of the first participant who trained with it for a total of 39 hours, notable improvements were observed in the participantā€™s hand functions. It showed that even without a prescribed training protocol, both participants were willing to train regularly with the WiGlove and its games, sometimes several times a day. These results demonstrate that WiGlove can be a promising tool for home-based rehabilitation for stroke survivors and serve as evidence for a larger user study with more participants with varying levels of motor impairments due to stroke. The findings of this study also offer preliminary evidence supporting the effectiveness of training with the WiGlove, particularly in the case of the first participant, who exhibited a significant reduction of tone in the hand as a result of increased training intensity. Owing to the participantā€™s satisfaction with the device, it was requested by him to extend his involvement in the study by using the WiGlove for a longer duration which was facilitated

    Evaluating footwear ā€œin the wildā€: Examining wrap and lace trail shoe closures during trail running

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    Trail running participation has grown over the last two decades. As a result, there have been an increasing number of studies examining the sport. Despite these increases, there is a lack of understanding regarding the effects of footwear on trail running biomechanics in ecologically valid conditions. The purpose of our study was to evaluate how a Wrap vs. Lace closure (on the same shoe) impacts running biomechanics on a trail. Thirty subjects ran a trail loop in each shoe while wearing a global positioning system (GPS) watch, heart rate monitor, inertial measurement units (IMUs), and plantar pressure insoles. The Wrap closure reduced peak foot eversion velocity (measured via IMU), which has been associated with fit. The Wrap closure also increased heel contact area, which is also associated with fit. This increase may be associated with the subjective preference for the Wrap. Lastly, runners had a small but significant increase in running speed in the Wrap shoe with no differences in heart rate nor subjective exertion. In total, the Wrap closure fit better than the Lace closure on a variety of terrain. This study demonstrates the feasibility of detecting meaningful biomechanical differences between footwear features in the wild using statistical tools and study design. Evaluating footwear in ecologically valid environments often creates additional variance in the data. This variance should not be treated as noise; instead, it is critical to capture this additional variance and challenges of ecologically valid terrain if we hope to use biomechanics to impact the development of new products

    Design and Administration of Patient-Centred Outcome Measures: The Perspectives of Children and Young People with Life-Limiting or Life-Threatening Conditions and Their Family Members

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    Background: Self-reported health data from children with life-limiting conditions is rarely collected. To improve acceptability and feasibility of child and family-centred outcome measures for children, they need to be designed in a way that reflects preferences, priorities and abilities. Objectives: The aim was to identify preferences for patient-reported outcome measure design (recall period, response format, length, administration mode) to improve the feasibility, acceptability, comprehensibility and relevance of a child and family-centred outcome measure, among children with life-limiting conditions and their family members. Method: A semi-structured qualitative interview study seeking the perspectives of children with life-limiting conditions, their siblings and parents on measure design was conducted. Participants were purposively sampled and recruited from nine UK sites. Verbatim transcripts were analysed using framework analysis. Results: A total of 79 participants were recruited: 39 children aged 5ā€“17 years (26 living with a life-limiting condition; 13 healthy siblings) and 40 parents (of children aged 0ā€“17 years). Children found a short recall period and a visually appealing measure with ten questions or fewer most acceptable. Children with life-limiting conditions were more familiar with using rating scales such as numeric and Likert than their healthy siblings. Children emphasised the importance of completing the measure alongside interactions with a healthcare professional to enable them to talk about their responses. While parents assumed that electronic completion methods would be most feasible and acceptable, a small number of children preferred paper. Conclusions: This study demonstrates that children with life-limiting conditions can engage in communicating preferences regarding the design of a patient-centred outcome measure. Where possible, children should be given the opportunity to participate in the measure development process to enhance acceptability and uptake in clinical practice. Results of this study should be considered in future research on outcome measure development in children
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