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The GRASP trial has completed recruitment and will now begin its follow up phase.
A reflexive thematic analysis of existential losses in men with osteoporosis: "I'm not the person I was somehow … although I am".
BACKGROUND: Osteoporosis is a global health concern that is likely to increase with a rapidly ageing world population. It affects one in three women and one in five men over the age of 50. Although there is a large body of qualitative research exploring the experience of living with osteoporosis, far fewer studies have focused on men. We aimed to explore the experiences of men with osteoporotic vertebral fracture. METHODS: We interviewed 13 White British men aged 63 to 94 with an osteoporotic vertebral fracture. We used the six stages of reflexive thematic analysis: familiarisation with the data; coding; generating initial themes; developing and reviewing themes through discussion; refining and naming themes; writing up. RESULTS: We developed six themes giving insight into the existential losses of men with osteoporosis: I have felt a step change coming; I regret that I am no longer the person I once was; it is demeaning (but others are worse off than me); I need to know where I am heading; I need to understand why me; I need to feel like I am in someone's hands. We describe moral narratives used in defence of self. CONCLUSIONS: Our findings highlight the challenge of deciphering the symptoms of osteoporosis and age-related changes. We also see the impact on self and a struggle to repair self. Healthcare providers are in a unique and privileged position to accompany their patients at points of existential crisis. As such, they attend to the repair of both identity and body. This comes with an ethical responsibility and has implications for clinical education. Health professionals should feel equipped to be alongside people facing existential losses. Qualitative research can give valuable insight into the phenomenology of illness and contribute to improvements in care pathways.
Exploring the emotional impact of pain on children and adolescents: A poetic meta-ethnography.
Pain in early life can go unreported and untreated. We use poems to portray findings from a systematic review of qualitative research. The overall aim of the review was to distil essential experiences across pain conditions and contexts. This report, focusing on the emotional impact of pain, is one of a series of three analyses from one systematic review of qualitative research. We used meta-ethnography to synthesise research. We identified studies in English that explored acute and/or chronic child and/or adolescent pain experience. Findings were distilled into themes and poems co-created in English and Spanish. We included 189 reports (177 unique studies) incorporating 5875 people (at least 3484 reported as female). Most studies (93%) included participants aged 11-20 years (range 2-38). The studies explored acute (24% studies), chronic (75%), and acute/chronic (1%). We report seven themes: (1) Pain can be hard to bear; (2) Pain is scary; (3) Pain is constantly at the back of my mind: (4) Pain makes me feel like I am outside alone; (5) Pain makes school a hard fit; (6) Pain can hurt me deep inside; (7) Pain has changed me. Our themes highlight the emotional impact of pain across conditions and contexts. Art and science are both integral to leaps in understanding. The contribution of the Arts is their unique ability to reach audiences on an affective level, giving the potential to underpin compassionate care and policy. We invite readers to utilise these poems to start a conversation about young people's pain experiences. This systematic review was registered on the PROSPERO database (CRD42023429027). Ethical permissions are not required for an evidence synthesis. PERSPECTIVE: The voices of young people in pain are not always heard. This article presents themes, in poetic form, from a synthesis of 189 qualitative studies. Science and art are integral to leaps in understanding and inclusive arts-based research methods have the potential to underpin compassionate pain care for young people.
Experience of exercise in people with severe haemophilia: A qualitative study
The benefits of regular activity and exercise are well established, yet a third of the population of the European Union does not achieve the recommended levels of activity. For patients with haemophilia, some activity can cause bleeding into joints, leading to potential joint damage, whereas other activities can protect the joint from bleeds and further destruction. This study investigates the understanding and experience of exercise and activity in people with haemophilia (PWH). We conducted semi-structured interviews with six men with severe haemophilia using a consecutive sampling framework and Interpretative Phenomenological Analysis (IPA). We identified five themes: •"I don't think about haemophilia, I've just got to deal with it"A level of acceptance of awareness of their condition, but they do not want it to rule their lives. •"I don't let my limitations hold me back"Striving to find activities they can participate in, despite joint impairment. •"The worst thing anyone can do is stop being active"Belief that activity helps to strengthen joints, gives confidence and improves both body and mind. •"The best thing they did was to not wrap me up in cotton wool"Knowledge of haemophilia, how to treat and recognise bleeds, and finding activities to suit their bodies. •"Time constraints at home"Common barriers to exercise, as in the general population. Our findings provide clinicians with insight into understanding the barriers to exercise and activity in men with severe haemophilia. This can help clinicians to offer the most appropriate support and allow PWH to find an activity or exercise that suits them. Our findings demonstrate that even those with severe haemophilia wish to remain active and do not want to let their limitations prevent them from exercising. Findings also indicate that being given the education and freedom to make independent decisions about exercise and activities are valued. This suggests that clinicians need to provide a therapeutic environment where their patients can feel safe to make sensible choices about types and level of activity.
Clinical effectiveness of an individually tailored strengthening programme, including progressive resistance exercises and advice, compared to usual care for ambulant adolescents with spastic cerebral palsy (ROBUST trial): a parallel group randomized controlled trial.
AIMS: Muscle strengthening exercises are one of the interventions frequently prescribed by physiotherapists for adolescents with cerebral palsy (CP). However, there is wide variability in the exercise regimes used and limited evidence of their effectiveness. The ROBUST trial will assess the clinical effectiveness of an individually tailored strengthening programme, including progressive resistance exercises and advice, compared to usual care for ambulant adolescents with spastic CP. METHODS: We are conducting a multicentre, two-arm, parallel group, superiority randomized controlled trial. We will recruit adolescents aged 12 to 18 years with a diagnosis of spastic CP (bilateral or unilateral) Gross Motor Function Classification System (GMFCS) levels I to III who are able to comply with the assessment procedures and exercise programme with or without support. Participants will be recruited from at least 12 UK NHS Trust physiotherapy and related services. Participants (n = 334) will be randomized (centralized computer-generated 1:1 allocation ratio) to either: 1) a progressive resistance exercise programme, with six one-to-one physiotherapy sessions over 16 weeks; or 2) usual NHS care, with a single physiotherapy session and an assessment session, and advice regarding self-management and exercise. CONCLUSION: The primary outcome is functional mobility measured using the child-/parent-reported Gait Outcomes Assessment List (GOAL) at six months. Secondary outcomes are: clinician-assessed muscle strength (Five Times Sit-to-Stand Test) and motor function (timed up and go test) at six months; functional mobility (GOAL) at 12 months; independence (GOAL subdomain A), balance (GOAL subdomain A, B, D), pain and discomfort (GOAL subdomain C), health-related quality of life (youth version of the EuroQol five-dimension questionnaire; EQ-5D-Y), educational attendance, exercise adherence, and additional physiotherapy treatment (six and 12 months). The primary analysis will be intention to treat.
Clinical effectiveness of a child-specific dynamic stretching programme, compared to usual care, for ambulant children with spastic cerebral palsy (SPELL trial): a parallel group randomized controlled trial.
AIMS: Dynamic muscle stretching exercises are one of the interventions frequently prescribed by physiotherapists for children with cerebral palsy (CP). However, there is wide variability in the exercise regimes used and limited evidence of their effectiveness. The SPELL trial will assess the clinical effectiveness of an individually tailored dynamic stretching programme, compared to usual care for ambulant children with spastic CP. METHODS: We are conducting a multicentre, two-arm, parallel group, superiority randomized controlled trial. We will recruit children aged four to 11 years with a diagnosis of spastic CP (bilateral or unilateral) and Gross Motor Function Classification System (GMFCS) levels I to III who are able to comply with assessment procedures and exercise programme with or without support. Participants will be recruited from at least 12 UK NHS Trust physiotherapy and related services. Participants (n = 334) will be randomized (centralized computer-generated one:one allocation ratio) to either: 1) a dynamic stretching exercise programme, with six one-to-one physiotherapy sessions over 16 weeks; or 2) usual NHS care, with a single physiotherapy session and an assessment, and advice regarding self-management and exercise. CONCLUSION: The primary outcome is functional mobility measured using the child-/parent-reported Gait Outcomes Assessment List (GOAL) at six months. Secondary outcomes are: joint range of motion (Cerebral Palsy Integrated Pathway protocol) and motor function (timed up and go test) at six months; functional mobility (GOAL) at 12 months; independence (GOAL subdomain A); balance (GOAL subdomain A, B, D); pain and discomfort (GOAL subdomain C); health-related quality of life (youth version of the EuroQol five-dimension questionnaire (EQ-5D-Y)); educational attendance; exercise adherence; and additional physiotherapy treatment at six and 12 months. The primary analysis will be intention to treat.
Modelling adrenal steroid profiles to inform monitoring guidance in congenital adrenal hyperplasia
Background: There is no consensus on how to monitor adrenal androgens in Congenital Adrenal Hyperplasia (CAH). Methods: Modelling of serum and salivary steroid profiles in healthy participants and patients with CAH randomised to either standard treatment or modified-release hydrocortisone hard capsules (MRHC). Findings: Changes in serum 17-hydroxyprogesterone (17OHP) and androstenedione (A4) paralleled each other in healthy participants (n = 19) and patients with CAH (n = 122). However, healthy participants had similar absolute levels of 17OHP and A4 whereas patients with CAH had proportionally higher levels of 17OHP. Cross-correlation showed no lag between serum 17OHP and A4. In CAH, Bayesian multiple change point analysis converged on a 17OHP of 4.5 nmol/l below which in proportion to 17OHP the A4 is lower. Patients on standard treatment had a morning peak in 17OHP and A4 whereas patients on MRHC had relatively flat profiles. Salivary androgens including 11-ketotestosterone correlated with serum 17OHP and A4 in female patients (r = 0.7 to 0.9). Interpretation: In CAH, elevated 17OHP drives the production of A4. High A4 reflects poor control, but low A4 does not indicate overtreatment. Accepting 17OHP is higher than A4, both measurements give similar reflection of control, and a 17OHP <38 nmol/l (1250 ng/dl) was associated with an A4 in the normal range <5 nmol/l (143 ng/dl) in 95% of patients and in clinical trials was used to define good control. On MRHC, which controls androgen levels over 24 h, a single sample of 17OHP and/or A4 can be used to monitor control. Salivary measurements reflect similar results to serum. Funding: Diurnal; MRC; NIH; NIHR.
The effect of COVID rehabilitation for ongoing symptoms Post HOSPitalisation with COVID-19 (PHOSP-R): protocol for a randomised parallel group controlled trial on behalf of the PHOSP consortium.
INTRODUCTION: Many adults hospitalised with COVID-19 have persistent symptoms such as fatigue, breathlessness and brain fog that limit day-to-day activities. These symptoms can last over 2 years. Whilst there is limited controlled studies on interventions that can support those with ongoing symptoms, there has been some promise in rehabilitation interventions in improving function and symptoms either using face-to-face or digital methods, but evidence remains limited and these studies often lack a control group. METHODS AND ANALYSIS: This is a nested single-blind, parallel group, randomised control trial with embedded qualitative evaluation comparing rehabilitation (face-to-face or digital) to usual care and conducted within the PHOSP-COVID study. The aim of this study is to determine the effectiveness of rehabilitation interventions on exercise capacity, quality of life and symptoms such as breathlessness and fatigue. The primary outcome is the Incremental Shuttle Walking Test following the eight week intervention phase. Secondary outcomes include measures of function, strength and subjective assessment of symptoms. Blood inflammatory markers and muscle biopsies are an exploratory outcome. The interventions last eight weeks and combine symptom-titrated exercise therapy, symptom management and education delivered either in a face-to-face setting or through a digital platform ( www.yourcovidrecovery.nhs.uk ). The proposed sample size is 159 participants, and data will be intention-to-treat analyses comparing rehabilitation (face-to-face or digital) to usual care. ETHICS AND DISSEMINATION: Ethical approval was gained as part of the PHOSP-COVID study by Yorkshire and the Humber Leeds West Research NHS Ethics Committee, and the study was prospectively registered on the ISRCTN trial registry (ISRCTN13293865). Results will be disseminated to stakeholders, including patients and members of the public, and published in appropriate journals. Strengths and limitations of this study • This protocol utilises two interventions to support those with ongoing symptoms of COVID-19 • This is a two-centre parallel-group randomised controlled trial • The protocol has been supported by patient and public involvement groups who identified treatments of symptoms and activity limitation as a top priority.
Remote postoperative management using Ecological Momentary Computerized Adaptive Testing (EMCAT): feasibility assessment survey.
Our survey of 38 surgeons shows that Ecological Momentary Computerized Adaptive Testing (EMCAT), a platform to remotely collect patient-reported outcome measures (PROMs) is acceptable to surgeons, and 36 of 38 are willing to participate in future randomized control trials comparing EMCAT versus routine follow-up.Level of evidence: IV.
Use of Patient-Reported Experience Measures in Pediatric Care: A Systematic Review.
Introduction: Patient-reported Experience Measures (PREMs) are validated questionnaires, that gather patients' and families' views of their experience receiving care and are commonly used to measure the quality of care, with the goal to make care more patient and family-centered. PREMs are increasingly being adopted in pediatric population, however knowledge gaps exist around understanding the use of PREMs in pediatrics. Objective: To identify and synthesize evidence on the use of PREMs in pediatric healthcare settings and their characteristics. Evidence Review: Preferred Reporting Items for Systematic Reviews and Meta-Analysis guidelines governed the conduct and reporting of this review. An exhaustive search strategy was applied to MEDLINE, EMBASE, PsycINFO, Cochrane Library, and CINAHL databases to identify relevant peer-reviewed articles from high-income countries. Additionally, gray literature was searched to capture real-world implementation of PREMs. All the articles were screened independently by two reviewers in two steps. Data was extracted independently, synthesized, and tabulated. Findings from gray literature was synthesized and reported separately. Risk of bias for the studies identified through scientific databases was assessed independently by two reviewers using the National Institutes of Health Quality Assessment Tool for Observational Cohort and Cross-Sectional Studies. Results: The initial search identified 15,457 articles. After removing duplicates, the title and abstracts of 11,543 articles were screened. Seven hundred ten articles were eligible for full-text review. Finally, 83 articles met the criteria and were included in the analyses. Of the 83 includes studies conducted in 14 countries, 48 were conducted in USA, 25 in European countries and 10 in other countries. These 83 studies reported on the use of 39 different PREMs in pediatric healthcare settings. The gray literature retrieved 10 additional PREMs. The number of items in these PREMs ranged from 7 to 89. Twenty-three PREMs were designed to be completed by proxy, 10 by either pediatric patients or family caregivers, and 6 by pediatric patients themselves. Conclusion and Relevance: This comprehensive review is the first to systematically search evidence around the use of PREMs in pediatrics. The findings of this review can guide health administrators and researchers to use appropriate PREMs to implement patient and family-centered care in pediatrics.
Intraoperative Blood Management Strategies for Patients Undergoing Noncardiac Surgery: The Ottawa Intraoperative Transfusion Consensus.
IMPORTANCE: There is marked variability in red blood cell (RBC) transfusion during the intraoperative period. The development and implementation of existing clinical practice guidelines have been ineffective in reducing this variability. OBJECTIVE: To develop an internationally endorsed consensus statement about intraoperative transfusion in major noncardiac surgery. EVIDENCE REVIEW: A Delphi consensus survey technique with an anonymous 3-round iterative rating and feedback process was used. An expert panel of surgeons, anesthesiologists, and transfusion medicine specialists was recruited internationally. Statements were informed by extensive preparatory work, including a systematic reviews of intraoperative RBC guidelines and clinical trials, an interview study with patients to explore their perspectives about intraoperative transfusion, and interviews with physicians to understand the various behaviors that influence intraoperative transfusion decision-making. Thirty-eight statements were developed addressing (1) decision-making (interprofessional communication, clinical factors, procedural considerations, and audits), (2) restrictive transfusion strategies, (3) patient-centred considerations, and (4) research considerations (equipoise, outcomes, and protocol suspension). Panelists were asked to score statements on a 7-point Likert scale. Consensus was established with at least 75% agreement. FINDINGS: The 34-member expert panel (14 of 33 women [42%]) included 16 anesthesiologists, 11 surgeons, and 7 transfusion specialists; panelists had a median of 16 years' experience (range, 2-50 years), mainly in Canada (52% [17 of 33]), the US (27% [9 of 33]), and Europe (15% [5 of 33]). The panel recommended routine preoperative and intraoperative discussion between surgeons and anesthesiologists about intraoperative RBC transfusion as well as postoperative review of intraoperative transfusion events. Point-of-care hemoglobin testing devices were recommended for transfusion guidance, alongside an algorithmic transfusion protocol with a restrictive hemoglobin trigger; however, more research is needed to evaluate the use of restrictive triggers in the operating room. Expert consensus recommended a detailed preoperative consent discussion with patients of the risks and benefits of both anemia and RBC transfusion and routine disclosure of intraoperative transfusion. Postoperative morbidity and mortality were recommended as the most relevant outcomes associated with intraoperative RBC transfusion, and transfusion triggers of 70 and 90 g/L were considered acceptable hemoglobin triggers to evaluate restrictive and liberal transfusion strategies, respectively, in clinical trials. CONCLUSIONS AND RELEVANCE: This consensus statement offers internationally endorsed expert guidance across several key domains on intraoperative RBC transfusion practice for noncardiac surgical procedures for which patients are at medium or high risk of bleeding. Future work should emphasize knowledge translation strategies to integrate these recommendations into routine clinical practice and transfusion research activities.
Research priorities of members of the British Association for Surgery of the Knee.
AIMS: This study aims to identify the top unanswered research priorities in the field of knee surgery using consensus-based methodology. METHODS: Initial research questions were generated using an online survey sent to all 680 members of the British Association for Surgery of the Knee (BASK). Duplicates were removed and a longlist was generated from this scoping exercise by a panel of 13 experts from across the UK who provided oversight of the process. A modified Delphi process was used to refine the questions and determine a final list. To rank the final list of questions, each question was scored between one (low importance) and ten (high importance) in order to produce the final list. RESULTS: This consensus exercise took place between December 2020 and April 2022. A total of 286 clinicians from the BASK membership provided input for the initial scoping exercise, which generated a list of 105 distinct research questions. Following review and prioritization, a longlist of 51 questions was sent out for two rounds of the Delphi process. A total of 42 clinicians responded to the first round and 24 responded to the second round. A final list of 24 research questions was then ranked by 36 clinicians. The topics included arthroplasty, infection, meniscus, osteotomy, patellofemoral, cartilage, and ligament pathologies. The management of early osteoarthritis was the highest-ranking question. CONCLUSION: A Delphi exercise involving the BASK membership has identified the future research priorities in knee surgery. This list of questions will allow clinicians, researchers, and funders to collaborate in order to deliver high-quality research in knee surgery and further advance the care provided to patients with knee pathology.
Multimodal imaging brain markers in early adolescence are linked with a physically active lifestyle
AbstractThe World Health Organization (WHO) promotes physical exercise and a healthy lifestyle as means to improve youth development. However, relationships between physical lifestyle and brain development are not fully understood. Here, we asked whether a brain – physical latent mode of covariation underpins the relationship between physical activity, fitness, and physical health measures with multimodal neuroimaging markers. In 50 12-year old school pupils (26 females), we acquired multimodal whole-brain MRI, characterizing brain structure, microstructure, function, myelin content, and blood perfusion. We also acquired physical variables measuring objective fitness levels, 7-days physical activity, body-mass index, heart rate, and blood pressure. Using canonical correlation analysis we unravel a latent mode of brain – physical covariation, independent of demographics, school, or socioeconomic status. We show that MRI metrics with greater involvement in this mode also showed spatially extended patterns across the brain. Specifically, global patterns of greater grey matter perfusion, volume, cortical surface area, greater white matter extra-neurite density, and resting state networks activity, covaried positively with measures reflecting a physically active phenotype (high fit, low sedentary individuals). Showing that a physically active lifestyle is linked with systems-level brain MRI metrics, these results suggest widespread associations relating to several biological processes. These results support the notion of close brain-body relationships and underline the importance of investigating modifiable lifestyle factors not only for physical health but also for brain health early in adolescence.Significance statementAn active lifestyle is key for healthy development. In this work, we answer the following question: How do brain neuroimaging markers relate with young adolescents’ level of physical activity, fitness, and physical health? Combining advanced whole-brain multimodal MRI metrics with computational approaches, we show a robust relationship between physically active lifestyles and spatially extended, multimodal brain imaging derived phenotypes. Suggesting a wider effect on brain neuroimaging metrics than previously thought, this work underlies the importance of studying physical lifestyle, as well as other brain – body relationships in an effort to foster brain health at this crucial stage in development.