Public involvement in health research: a case study of one NHS project over 5 years

Background: Public involvement, both in the National Health Service (NHS) and in clinical research, is promoted as an important democratic principle. The declared aims are to reduce professional autocracy and allow a broader ownership of the research agenda; also to improve the design of, and recruitment and retention of patients to, clinical studies. There have been a number of national initiatives in the UK to improve public input to clinical research activities, but very few reports of effective and sustainable partnerships over time. This study reports the evaluation of one example, which is embedded in the NHS and university partnerships in the Norfolk area of England. Objectives Evaluate: • Putting principles into practice of public involvement in research over a 5 year period for one specific project (Patient and Public Involvement in Research). • How the model contributes to, and impacts upon, all stages of the research process. • Attitudes of the research community and lay volunteers to their mutual experiences of public involvement. • Key factors and strengths of this project, and areas for improvement. Methods: A mixed methods approach related to the 5 years from start of 2003 to end of 2007. This used descriptive statistics of volunteer activity, interviews with key stakeholders (13), questionnaires (53% response rate), and focus group with 10 volunteers to explore emergent themes. We analysed findings using a policy framework approach. Results: About 47 of the original 55 volunteers remained on the panel after 5 years. All have undertaken training, 38% have been involved in the full range of research activities offered, and 75% have attended at least one research project meeting. Some are active in governance, ethics, and advisory committees. Both the research community and the volunteers are very positive about the project. The researchers find it provides well prepared personnel, and gives a speedy and efficient way of fulfilling the expectations of funders for lay input. The volunteers find it gives them important opportunities to influence the quality of research and thus support improvements in patient care. Areas for improvement include increasing social diversity among the volunteers, and improving feedback on input from volunteers, without which volunteers tend to lose confidence and motivation. Conclusion: Long-term sustainable and valuable public input to research is possible. Key factors are committing resources, embedding the service in the infrastructure of a research consortium, and ongoing responsiveness by NHS staff and researchers. Additional activity to recruit and support access may be needed to attract people from a broad range of sociodemographic backgrounds. Some volunteers want more involvement than this model currently offers

Gender- and gamete-specific patterns of X chromosome segregation in a three-gendered nematode

Meiosis is at the core of sexual reproduction and alterations to its program can have dramatic effects. In this study, we investigate the segregation pattern of the X chromosome in Auanema rhodensis, a three-gendered nematode. This species has an atypical pattern of X chromosome segregation during male spermatogenesis that results in the exclusive production of haplo-X sperm. Here we use a combination of genetic and cytological approaches to show that while XX females undergo conventional meiosis to produce mostly haplo-X oocytes, hermaphrodites undergo atypical meiosis to produce nullo-X oocytes and mostly diplo-X sperm. Gender- and gamete-specific alterations of the normal meiotic program include non-pairing of the X homologs and precocious separation of X chromatids. Given these intra-species, intra-individual and intra-gametogenesis variations in meiotic program of A. rhodensis, we argue that it is an ideal model to study the plasticity of meiosis and how it can be modulated

ePortfolio to support professional development during experiential learning placements: Guided by students-as-partners theory, enabled through students-as-partners practice

This case study applies a students-as-partners focus to the use of ePortfolio concepts during experiential learning placements. In describing our project and as evident here, in referring to ePortfolio in the singular, we cite it as an abstract concept, while the plural reference marks practice, in this study taking the form of studentgenerated instances of ePortfolio use, in particular as detailed in the ePortfolios experiences of two final-year students on experiential placement in a pharmacy programme. These two students used their ePortfolio to document and reflect critically on their experiential placements, showcasing their own studentgenerated ePortfolios at a symposium co-hosted by student partners, their placement preceptor, and other mentors. This student co-developed case study summarises key findings, including how the use of ePortfolio can support learner agency, and outlines recommendations for further incorporating ePortfolio use in experiential learning contexts. While grounded in the context of an undergraduate pharmacy programme, much of the study will resonate with colleagues based in International Journal for Students as Partners Vol. 7, Issue 2. October 2023 Roche, C., Abria, L., Farrell, O., Johnston, J., Penny Light, T., McKibben, A., Reast, A., & Yancey, K. B. (2023). “ePortfolio to support professional development during experiential learning placements: Guided by students-as-partners theory, enabled through students-as-partners practice” International Journal for other disciplines aligned with competency frameworks. The staff-student collaborative approach explored in this case study is likely of interest to students, educators, preceptors, tutors, mentors, and others developing curricula with an ePortfolio component

Relative fat oxidation is higher in children than adults

Background: Prepubescent children may oxidize fatty acids more readily than adults. Therefore, dietary fat needs would be higher for children compared with adults. The dietary fat recommendations are higher for children 4 to 18 yrs (i.e., 25 to 35% of energy) compared with adults (i.e., 20 to 35% of energy). Despite this, many parents and children restrict dietary fat for health reasons. Methods: This study assessed whether rates of fat oxidation are similar between prepubescent children and adults. Ten children (8.7 ± 1.4 yr, 33 ± 13 kg mean ± SD) in Tanner stage 1 and 10 adults (41.6 ± 8 yr, 74 ± 13 kg) were fed a weight maintenance diet for three days to maintain body weight and to establish a consistent background for metabolic rate measurements (all foods provided). Metabolic rate was measured on three separate occasions before and immediately after breakfast and for 9 hrs using a hood system (twice) or a room calorimeter (once) where continuous metabolic measurements were taken. Results: During all three sessions whole body fat oxidation was higher in children (lower RQ) compared to adults (mean RQ= 0.84 ± .016 for children and 0.87 ± .02, for adults, p < 0.02). Although, total grams of fat oxidized was similar in children (62.7 ± 20 g/24 hrs) compared to adults (51.4 ± 19 g/24 hrs), the grams of fat oxidized relative to calorie expenditure was higher in children (0.047 ± .01 g/kcal, compared to adults (0.032 ± .01 p < 0.02). Females oxidized more fat relative to calorie expenditure than males of a similar age. A two way ANOVA showed no interaction between gender and age in terms of fax oxidation. Conclusion: These data suggest that fat oxidation relative to total calorie expenditure is higher in prepubescent children than in adults. Consistent with current dietary guidelines, a moderate fat diet is appropriate for children within the context of a diet that meets their energy and nutrient needs. Originally published Nutrition Journal, Vol. 6, No. 19, Aug 200

Group early intervention eye movement desensitization and reprocessing therapy as a video-conference psychotherapy with frontline/emergency workers in response to the COVID-19 pandemic in the treatment of post-traumatic stress disorder and moral injury—An RCT study

Objective: Frontline mental health, emergency, law enforcement, and social workers have faced unprecedented psychological distress in responding to the COVID-19 pandemic. The purpose of the RCT (Randomized Controls Trial) study was to investigate the effectiveness of a Group EMDR (Eye Movement Desensitization and Reprocessing) therapy (Group Traumatic Episode Protocol—GTEP) in the treatment of Post-Traumatic Stress Disorder (PTSD) and Moral Injury. The treatment focus is an early intervention, group trauma treatment, delivered remotely as video-conference psychotherapy (VCP). This early intervention used an intensive treatment delivery of 4x2h sessions over 1-week. Additionally, the group EMDR intervention utilized therapist rotation in treatment delivery. Methods: The study’s design comprised a delayed (1-month) treatment intervention (control) versus an active group. Measurements included the International Trauma Questionnaire (ITQ), Generalized Anxiety Disorder Assessment (GAD-7), Patient Health Questionnaire (PHQ-9), Moral Injury Events Scale (MIES), and a Quality-of-Life psychometric (EQ-5D), tested at T0, T1: pre—treatment, T2: post-treatment, T3: 1-month follow-up (FU), T4: 3-month FU, and T5: 6-month FU. The Adverse Childhood Experiences – International version (ACEs), Benevolent Childhood Experience (BCEs) was ascertained at pre-treatment only. N = 85 completed the study. Results: Results highlight a significant treatment effect within both active and control groups. Post Hoc comparisons of the ITQ demonstrated a significant difference between T1 pre (mean 36.8, SD 14.8) and T2 post (21.2, 15.1) (t11.58) = 15.68, p < 0.001). Further changes were also seen related to co-morbid factors. Post Hoc comparisons of the GAD-7 demonstrated significant difference between T1 pre (11.2, 4.91) and T2 post (6.49, 4.73) (t = 6.22) = 4.41, p < 0.001; with significant difference also with the PHQ-9 between T1 pre (11.7, 5.68) and T2 post (6.64, 5.79) (t = 6.30) = 3.95, p < 0.001, d = 0.71. The treatment effect occurred irrespective of either ACEs/BCEs during childhood. However, regarding Moral Injury, the MIES demonstrated no treatment effect between T1 pre and T5 6-month FU. The study’s findings discuss the impact of Group EMDR therapy delivered remotely as video-conference psychotherapy (VCP) and the benefits of including a therapist/rotation model as a means of treatment delivery. However, despite promising results suggesting a large treatment effect in the treatment of trauma and adverse memories, including co-morbid symptoms, research results yielded no treatment effect in frontline/emergency workers in addressing moral injury related to the COVID-19 pandemic. Conclusion: The NICE (2018) guidance on PTSD highlighted the paucity of EMDR therapy research used as an early intervention. The primary rationale for this study was to address this critical issue. In summary, treatment results for group EMDR, delivered virtually, intensively, using therapist rotation are tentatively promising, however, the moral dimensions of trauma need consideration for future research, intervention development, and potential for further scalability. The data contributes to the emerging literature on early trauma interventions. Clinical Trial Registration:Clinicaltrials.gov, ISRCTN16933691

Rapid tests and urine sampling techniques for the diagnosis of urinary tract infection (UTI) in children under five years: a systematic review

Background: Urinary tract infection (UTI) is one of the most common sources of infection in children under five. Prompt diagnosis and treatment is important to reduce the risk of renal scarring. Rapid, cost-effective, methods of UTI diagnosis are required as an alternative to culture. Methods: We conducted a systematic review to determine the diagnostic accuracy of rapid tests for detecting UTI in children under five years of age. Results: The evidence supports the use of dipstick positive for both leukocyte esterase and nitrite (pooled LR+ = 28.2, 95% CI: 17.3, 46.0) or microscopy positive for both pyuria and bacteriuria (pooled LR+ = 37.0, 95% CI: 11.0, 125.9) to rule in UTI. Similarly dipstick negative for both LE and nitrite (Pooled LR- = 0.20, 95% CI: 0.16, 0.26) or microscopy negative for both pyuria and bacteriuria (Pooled LR- = 0.11, 95% CI: 0.05, 0.23) can be used to rule out UTI. A test for glucose showed promise in potty-trained children. However, all studies were over 30 years old. Further evaluation of this test may be useful. Conclusion: Dipstick negative for both LE and nitrite or microscopic analysis negative for both pyuria and bacteriuria of a clean voided urine, bag, or nappy/pad specimen may reasonably be used to rule out UTI. These patients can then reasonably be excluded from further investigation, without the need for confirmatory culture. Similarly, combinations of positive tests could be used to rule in UTI, and trigger further investigation

Successful recruitment to trials : findings from the SCIMITAR+ Trial

BACKGROUND: Randomised controlled trials (RCT) can struggle to recruit to target on time. This is especially the case with hard to reach populations such as those with severe mental ill health. The SCIMITAR+ trial, a trial of a bespoke smoking cessation intervention for people with severe mental ill health achieved their recruitment ahead of time and target. This article reports strategies that helped us to achieve this with the aim of aiding others recruiting from similar populations. METHODS: SCIMITAR+ is a multi-centre pragmatic two-arm parallel-group RCT, which aimed to recruit 400 participants with severe mental ill health who smoke and would like to cut down or quit. The study recruited primarily in secondary care through community mental health teams and psychiatrists with a smaller number of participants recruited through primary care. Recruitment opened in October 2015 and closed in December 2016, by which point 526 participants had been recruited. We gathered information from recruiting sites on strategies which led to the successful recruitment in SCIMITAR+ and in this article present our approach to trial management along with the strategies employed by the recruiting sites. RESULTS: Alongside having a dedicated trial manager and trial management team, we identified three main themes that led to successful recruitment. These were: clinicians with a positive attitude to research; researchers and clinicians working together; and the use of NHS targets. The overriding theme was the importance of relationships between both the researchers and the recruiting clinicians and the recruiting clinicians and the participants. CONCLUSIONS: This study makes a significant contribution to the limited evidence base of real-world cases of successful recruitment to RCTs and offers practical guidance to those planning and conducting trials. Building positive relationships between clinicians, researchers and participants is crucial to successful recruitment

How does study quality affect the results of a diagnostic meta-analysis?

Background: The use of systematic literature review to inform evidence based practice in diagnostics is rapidly expanding. Although the primary diagnostic literature is extensive, studies are often of low methodological quality or poorly reported. There has been no rigorously evaluated, evidence based tool to assess the methodological quality of diagnostic studies. The primary objective of this study was to determine the extent to which variations in the quality of primary studies impact the results of a diagnostic meta-analysis and whether this differs with diagnostic test type. A secondary objective was to contribute to the evaluation of QUADAS, an evidence-based tool for the assessment of quality in diagnostic accuracy studies. Methods: This study was conducted as part of large systematic review of tests used in the diagnosis and further investigation of urinary tract infection (UTI) in children. All studies included in this review were assessed using QUADAS, an evidence-based tool for the assessment of quality in systematic reviews of diagnostic accuracy studies. The impact of individual components of QUADAS on a summary measure of diagnostic accuracy was investigated using regression analysis. The review divided the diagnosis and further investigation of UTI into the following three clinical stages: diagnosis of UTI, localisation of infection, and further investigation of the UTI. Each stage used different types of diagnostic test, which were considered to involve different quality concerns. Results: Many of the studies included in our review were poorly reported. The proportion of QUADAS items fulfilled was similar for studies in different sections of the review. However, as might be expected, the individual items fulfilled differed between the three clinical stages. Regression analysis found that different items showed a strong association with test performance for the different tests evaluated. These differences were observed both within and between the three clinical stages assessed by the review. The results of regression analyses were also affected by whether or not a weighting (by sample size) was applied. Our analysis was severely limited by the completeness of reporting and the differences between the index tests evaluated and the reference standards used to confirm diagnoses in the primary studies. Few tests were evaluated by sufficient studies to allow meaningful use of meta-analytic pooling and investigation of heterogeneity. This meant that further analysis to investigate heterogeneity could only be undertaken using a subset of studies, and that the findings are open to various interpretations. Conclusion: Further work is needed to investigate the influence of methodological quality on the results of diagnostic meta-analyses. Large data sets of well-reported primary studies are needed to address this question. Without significant improvements in the completeness of reporting of primary studies, progress in this area will be limited

Sex- and Gamete-Specific Patterns of X Chromosome Segregation in a Trioecious Nematode

Three key steps in meiosis allow diploid organisms to produce haploid gametes: (1) homologous chromosomes (homologs) pair and undergo crossovers; (2) homologs segregate to opposite poles; and (3) sister chromatids segregate to opposite poles. The XX/XO sex determination system found in many nematodes [1] facilitates the study of meiosis because variation is easily recognized [2, 3, 4]. Here we show that meiotic segregation of X chromosomes in the trioecious nematode Auanema rhodensis [5] varies according to sex (hermaphrodite, female, or male) and type of gametogenesis (oogenesis or spermatogenesis). In this species, XO males exclusively produce X-bearing sperm [6, 7]. The unpaired X precociously separates into sister chromatids, which co-segregate with the autosome set to generate a functional haplo-X sperm. The other set of autosomes is discarded into a residual body. Here we explore the X chromosome behavior in female and hermaphrodite meioses. Whereas X chromosomes segregate following the canonical pattern during XX female oogenesis to yield haplo-X oocytes, during XX hermaphrodite oogenesis they segregate to the first polar body to yield nullo-X oocytes. Thus, crosses between XX hermaphrodites and males yield exclusively male progeny. During hermaphrodite spermatogenesis, the sister chromatids of the X chromosomes separate during meiosis I, and homologous X chromatids segregate to the functional sperm to create diplo-X sperm. Given these intra-species, intra-individual, and intra-gametogenesis variations in the meiotic program, A. rhodensis is an ideal model for studying the plasticity of meiosis and how it can be modulated