3,779 research outputs found

    Effectiveness and perspectives of women in the Dutch breast cancer screening programme

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    This thesis provides an overview of the evaluation of the Dutch breast cancer screening programme. The first part evaluates the effectiveness of the current programme and whether it can be improved. The second part focusses on the perspectives of the women eligible for breast cancer screening and their quality of life

    Translating patient needs into medical device development: co-design of a photoprotection visor for Xeroderma Pigmentosum using qualitative interviews

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    Introduction: People with Xeroderma Pigmentosum (XP) have a heightened sensitivity to ultraviolet radiation (UVR) and are advised to wear photoprotective clothing including a visor covering the face and neck. Photoprotective visors are homemade and predominately worn by children with decreasing frequency as age increases. To improve upon the current design and efficacy we were tasked with developing a prototype visor to meet patients’ needs. Methods: Adopting a codesign methodology, patients’ experiences of wearing a visor and patient and carer views of emerging prototypes were explored during interviews. A thematic analysis was conducted in parallel with data collection and themes were interpreted into design cues; desirable attributes of a visor that would counteract the negative user experiences and meet the requirements described by patients and carers. The design cues guided the iterative development of prototypes by academic engineers. Results: Twenty-four interviews were conducted with patients and carers. Thematic analysis resulted in the following five themes: Being safe from UVR exposure; self-consciousness; temperature effects; acoustic difficulties; and material properties. The following design cues were developed from the themes respectively; materials and design with high UVR protection; ability to customise with own headwear; ventilation to reduce steaming up; acoustic functionality to enable hearing and speech; foldable, portable, and easy to put on and take off. Conclusions: It is important to understand people’s experiences of using medical devices to improve their safety, efficiency and user satisfaction. The user experience themes and design cues, informed the iterative development of low fidelity visor prototypes as part of a codesign process. These design cues and responses to the prototypes are guiding commercial manufacturing and regulatory approval. The visor can then be prescribed to patients, providing an equitable service of care

    Expert United Kingdom consensus on the preservation of joint health in people with moderate and severe haemophilia A: A modified Delphi panel

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    Aim: For people with haemophilia A (PwHA), bleeding in the joints leads to joint damage and haemophilia-related arthropathy, impacting range of motion and life expectancy. Existing guidelines for managing haemophilia A support healthcare professionals (HCPs) and PwHA in their efforts to preserve joint health. However, such guidance should be reviewed, considering emerging evidence and consensus as presented in this manuscript. Methods: Fifteen HCPs experienced in the management of PwHA in the UK participated in a three-round Delphi panel. Consensus was defined at ≥70% of panellists agreeing or disagreeing for Likert-scale questions, and ≥70% selecting the same option for multiple- or single-choice questions. Questions not reaching consensus were revised for the next round. Results: 26.8% (11/41), 44.8% (13/29) and 93.3% (14/15) of statements reached consensus in Rounds 1, 2 and 3, respectively. HCPs agreed that prophylaxis should be offered to patients with a baseline factor VIII (FVIII) level of ≤5 IU/dL and that, where there is no treatment burden, the aim of prophylaxis should be to achieve a trough FVIII level ≥15 IU/dL and maintain a longer period with FVIII levels of ≥20-30 IU/dL to provide better bleed protection. The aspirational goal for PwHA is to prevent all joint bleeds, which may be achieved by maintaining normalised (50-150 IU/dL) FVIII levels. Conclusion: The panel of experts were largely aligned on approaches to preserving joint health in PwHA, and this consensus may help guide HCPs

    Effectiveness and perspectives of women in the Dutch breast cancer screening programme

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    This thesis provides an overview of the evaluation of the Dutch breast cancer screening programme. The first part evaluates the effectiveness of the current programme and whether it can be improved. The second part focusses on the perspectives of the women eligible for breast cancer screening and their quality of life

    Pragmatic randomised controlled trial of guided self-help versus individual cognitive behavioural therapy with a trauma focus for post-traumatic stress disorder (RAPID)

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    This is the final version. Available on open access from the NIHR Journals Library via the DOI in this recordData availability: All available data can be obtained from the corresponding author.BACKGROUND: Guided self-help has been shown to be effective for other mental conditions and, if effective for post-traumatic stress disorder, would offer a time-efficient and accessible treatment option, with the potential to reduce waiting times and costs. OBJECTIVE: To determine if trauma-focused guided self-help is non-inferior to individual, face-to-face cognitive-behavioural therapy with a trauma focus for mild to moderate post-traumatic stress disorder to a single traumatic event. DESIGN: Multicentre pragmatic randomised controlled non-inferiority trial with economic evaluation to determine cost-effectiveness and nested process evaluation to assess fidelity and adherence, dose and factors that influence outcome (including context, acceptability, facilitators and barriers, measured qualitatively). Participants were randomised in a 1 : 1 ratio. The primary analysis was intention to treat using multilevel analysis of covariance. SETTING: Primary and secondary mental health settings across the United Kingdom's National Health Service. PARTICIPANTS: One hundred and ninety-six adults with a primary diagnosis of mild to moderate post-traumatic stress disorder were randomised with 82% retention at 16 weeks and 71% at 52 weeks. Nineteen participants and ten therapists were interviewed for the process evaluation. INTERVENTIONS: Up to 12 face-to-face, manualised, individual cognitive-behavioural therapy with a trauma focus sessions, each lasting 60-90 minutes, or to guided self-help using Spring, an eight-step online guided self-help programme based on cognitive-behavioural therapy with a trauma focus, with up to five face-to-face meetings of up to 3 hours in total and four brief telephone calls or e-mail contacts between sessions. MAIN OUTCOME MEASURES: Primary outcome: the Clinician-Administered PTSD Scale for Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition, at 16 weeks post-randomisation. Secondary outcomes: included severity of post-traumatic stress disorder symptoms at 52 weeks, and functioning, symptoms of depression, symptoms of anxiety, alcohol use and perceived social support at both 16 and 52 weeks post-randomisation. Those assessing outcomes were blinded to group assignment. RESULTS: Non-inferiority was demonstrated at the primary end point of 16 weeks on the Clinician-Administered PTSD Scale for Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition [mean difference 1.01 (one-sided 95% CI -∞ to 3.90, non-inferiority p = 0.012)]. Clinician-Administered PTSD Scale for Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition, score improvements of over 60% in both groups were maintained at 52 weeks but the non-inferiority results were inconclusive in favour of cognitive-behavioural therapy with a trauma focus at this timepoint [mean difference 3.20 (one-sided 95% confidence interval -∞ to 6.00, non-inferiority p = 0.15)]. Guided self-help using Spring was not shown to be more cost-effective than face-to-face cognitive-behavioural therapy with a trauma focus although there was no significant difference in accruing quality-adjusted life-years, incremental quality-adjusted life-years -0.04 (95% confidence interval -0.10 to 0.01) and guided self-help using Spring was significantly cheaper to deliver [£277 (95% confidence interval £253 to £301) vs. £729 (95% CI £671 to £788)]. Guided self-help using Spring appeared to be acceptable and well tolerated by participants. No important adverse events or side effects were identified. LIMITATIONS: The results are not generalisable to people with post-traumatic stress disorder to more than one traumatic event. CONCLUSIONS: Guided self-help using Spring for mild to moderate post-traumatic stress disorder to a single traumatic event appears to be non-inferior to individual face-to-face cognitive-behavioural therapy with a trauma focus and the results suggest it should be considered a first-line treatment for people with this condition. FUTURE WORK: Work is now needed to determine how best to effectively disseminate and implement guided self-help using Spring at scale. TRIAL REGISTRATION: This trial is registered as ISRCTN13697710. FUNDING: This award was funded by the National Institute for Health and Care Research (NIHR) Health Technology Assessment programme (NIHR award ref: 14/192/97) and is published in full in Health Technology Assessment; Vol. 27, No. 26. See the NIHR Funding and Awards website for further award information.National Institute for Health and Care Research (NIHR

    Characteristics of alpha-1 antitrypsin deficiency related lung disease exacerbations using a daily symptom diary and urinary biomarkers

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    Background: Pulmonary exacerbations in alpha-1 antitrypsin deficiency (AATD) related lung disease are a significant contributor to disease burden, as with usual COPD. Separating the early stages of an exacerbation from the day-to-day variation in stable COPD is central to the concerns of both clinicians and patients and has been identified as a research priority by NIHR.Clinical tools that distinguish baseline symptoms from those of an exacerbation could allow early and appropriate treatment of AECOPD to reduce the impact and potentially may slow disease progression thereby improving survival and quality of life. Candidate tools include symptom diaries and biomarkers of infection and acute inflammation. Urinary biomarkers of AECOPD have yet to be explored in AATD related COPD. Methods: 55 patients with AATD related lung disease with a history of 2 or more AECOPD in the preceding year were prospectively followed for 18 months. Each patient recorded symptom scores daily via an electronic symptom diary (eDiary) based on Bronkotest. Urinary biomarkers for AAT, NE, CRP, TIMP1 and desmosine were measured weekly using a home urinary lateral flow device. During self-reported AECOPD patients were asked to perform urine analysis on the first 7 consecutive days.Results: Type I Anthonisen exacerbations and episodes occurring in autumn/winter lasted longer than Type II/III exacerbations and spring/summer episodes respectively. Median urinary CRP concentration across all study participants increased during Type I AECOPD. eDiary adherence was 68% over a median of 17.8 months (IQR 15.7 to 18.5).Conclusions: Use of an eDiary and urinary biomarkers to detect and characterise AECOPD remotely in AATD related lung disease is feasible over a prolonged period and paves the way for precision detection of exacerbations. <br/

    Experiences of emotional eating in an Acceptance and Commitment Therapy based weight management intervention (SWiM): A qualitative study

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    Background Emotional eating is a barrier to weight management. Interventions based on Acceptance and Commitment Therapy (ACT) promote the acceptance of uncomfortable feelings, which can reduce the urge to use food as a coping mechanism. We aimed to explore how participants of an ACT-based weight management intervention (WMI) experience emotional eating and relevant intervention content. Methods We conducted semi-structured telephone interviews with participants of a digital ACT-based guided self-help WMI. Fifteen participants were purposefully selected to represent a range of demographic characteristics and emotional eating scores. We used reflexive thematic analysis to explore experiences of emotional eating. Results We generated five themes. Participants improved emotional eating by disconnecting emotions from behaviours though increased self-awareness (theme 1) and by implementing alternative coping strategies, including preparation, substitution, and acceptance (theme 2). Most participants maintained improvements in emotional eating over time but wished for more opportunities to re-engage with intervention content, including more immediate support in triggering situations (theme 3). Participants who struggled to engage with emotional eating related intervention content often displayed an external locus of control over emotional eating triggers (theme 4). The perceived usefulness of the intervention depended on participants’ prior experiences of emotional eating, and was thought insufficient for participants with complex emotional experiences (theme 5). Discussion This ACT-based WMI helped participants with emotional eating by improving self-awareness and teaching alternative coping strategies. Intervention developers may consider adding ongoing forms of intervention that provide both real-time and long-term support. Additionally, a better understanding of how to support people with an external locus of control and people with complex experiences of emotional eating is needed. Future research may explore ways of personalising WMIs based on participants’ emotional needs

    The development, feasibility, and acceptability of a breakfast group intervention for stroke rehabilitation

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    Background: There are 1.2 million stroke survivors in the UK and the number is projected to increase significantly over the next decade. Research suggests that between 50% and 80% of hospitalised stroke survivors experience difficulties with eating and drinking. Presently, rehabilitation approaches to address these difficulties involve individual rehabilitation sessions led by uni-professionals. Recent national stroke guidance recommends that stroke survivors receive three hours of daily rehabilitation and emphasises the importance of addressing the psychosocial aspects of recovery. Implementing these recommendations presents a challenge to healthcare professionals, who must explore innovative methods to provide the necessary rehabilitation intensity. This study aimed to address these challenges by codesigning a multi-disciplinary breakfast group intervention and implementation toolkit to improve psychosocial outcomes. Methods: The Hawkins 3-step framework for intervention design was used to develop a multidisciplinary breakfast group intervention and to understand if it was acceptable and feasible for patients and healthcare professionals in an acute stroke ward. The Hawkins 3- steps were 1) evidence review and consultations 2) coproduction 3) prototyping. In collaboration with fifteen stakeholders, a prototype breakfast group intervention and implementation toolkit were codesigned over four months. Experience-based Codesign was used to engage stakeholders. Results: The literature review is the first to investigate the psychosocial impact of eating and drinking difficulties post stroke. The key finding was the presence of psychological and social impacts which included, the experience of loss, fear, embarrassment shame and humiliation as well as social isolation. Stroke survivors were striving to get back to normality and this included the desire to socially dine with others. Two prototype iterations of the intervention were tested with 16 stroke survivors across three hospital sites. The multidisciplinary breakfast group intervention was designed to offer intensive rehabilitation in a social group context. The codesigned implementation toolkit guided a personalised and tailored approach. A perceived benefit of the intervention was the opportunity to address the psychosocial aspects of eating and drinking rehabilitation as well as providing physical rehabilitation. Stroke survivors highly value the opportunity to socialise and receive support from their peers. The intervention was acceptable to both patients and healthcare professionals, and the workforce model proved practical and feasible to deliver using a collaborative approach in the context of resource-limited healthcare. Conclusions: The breakfast group interventions, developed through codesign, were positively received by patients and staff and feasible to deliver. They introduce an innovative and novel approach to stroke rehabilitation, personalised to each individual's needs, and offer a comprehensive intervention which addresses both physical and psychosocial aspects which target challenges related to eating and drinking. Unique contributions of this study include a theoretical model for breakfast group interventions, a programme theory and practical tool kit for clinicians to support the translation of research findings and implement breakfast groups in clinical practice

    A narrative literature review using placemaking theories to unravel student social connectedness in hybrid university learning environments

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    Student social connectedness is indicated to be changing with the increasing digitalisation of universities. This narrative literature review aims to bring new meanings to the hybrid university learning environment (HULE), and to develop a framework for the benefit of student social connectedness by using placemaking theories. It searches through the academic literature for evidence of experience with three attributes of social connectedness: socialising, social support, and sense of belonging, in relation to individuals’ sense of place, bringing a range of outcomes, such as identity development, which might contribute to improved social connectedness. This is then expanded in the HULE by looking at the physical and online spaces, with a focus on liminal space and co-design. The findings show that an overly rigid structure of the HULE can cause negative student social connectedness, with co-design being proposed as a way of creating a tailored and connected learning experience. However, this is underdeveloped for learning environment needs and could be enhanced by applying placemaking theories to map levels of student social connectedness in the physical location and in the more-than-real ‘non-places’. This provides an innovative perspective of the HULE based on student social connectedness, impacting the existing pedagogical approach for university courses
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