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The Pediatric Eosinophilic Esophagitis Sign/Symptom Questionnaire for Caregivers (PESQ-C) is a novel clinical outcome assessment that was administered daily in EoE KIDS to assess signs (caregiver-observed eosinophilic esophagitis [EoE] symptoms) in patients aged 1 to 11 years. This study aimed to validate this novel instrument. Blinded baseline and week 16 data from the randomized, interventional, phase 3 EoE KIDS study (NCT04394351) were analyzed to evaluate the measurement properties of the PESQ-C, including reliability, construct and known-groups validity, responsiveness, and interpretation of change. Exit interviews at week 16 elicited caregivers' perspectives on patient experience before and after treatment to ascertain the level of change in PESQ-C scores that was considered meaningful. Caregivers completed the PESQ-C for 99 patients (median age, 8 years; 75.8% male; 82.8% White). Test-retest reliability scores (intraclass correlation coefficient, 0.94) exceeded the acceptable threshold for reliability (>0.70). As hypothesized, construct validity correlations with other clinical assessments measuring concepts similar to those of the PESQ-C were moderate at baseline and week 16, and PESQ-C scores discriminated among patient groups defined by EoE severity. Insufficient correlation with anchor measures precluded quantitative determination of meaningful change. In qualitative exit interviews performed with 69 caregivers, 83% felt that the patient experienced meaningful change; for patients with 2 or more days' improvements, 38% of caregivers said that even a 1-day improvement is meaningful. This analysis confirmed the reliability and validity of the PESQ-C for evaluating caregiver-observed EoE signs in pediatric patients within a clinical study context. Exit interviews provided evidence supporting meaningful changes in EoE signs.
Teaching dermatology is challenging because of its' highly visible and tactile nature. While images improve visual memory and are valuable teaching aids, even high-quality photographs have limitations in what they can convey. Our aim is to validate the use of silicone-based 3D skin models as simulation-based educational tools by assessing their impact on recognition of various skin conditions among nursing students. A quasi-experimental, two-groups study was conducted in a Higher Education Institute in Ireland. Participants were third-year undergraduate nursing students enrolled in a bachelor's programme in General Nursing or Children's and General Nursing, registered for a general module. We included 153 participants, 79 were in the control group and 74 were in the interventional group. Nursing students rotated individually among stations to observe both 3D skin models and photographs of the models. At each station, students completed an answer sheet including questions on identifying skin categories and conditions, along with a validated scale to assess satisfaction, confidence, and realism in using these models. Each station illustrated five skin conditions using either models or photographs. Both groups visited both stations; only the sequence of visits varied between them. The 3D skin models significantly improved nursing students' identification of the papulosquamous skin category (47.8 % interventional group and 24.4 % control group, p = 0.003). Additionally, students exposed to the models had higher scores for categorisation (mean ranks; 85.05 interventional group and 69.46 control group, p = 0.023). Qualitative data revealed students' favourable perceptions of the 3D models as effective learning tools, particularly their realism and sensory aspects. Suggestions for model improvements, including skin tone and positioning on the body, are likely to enhance effectiveness. Integrating 3D skin models into nursing education curricula is highly recommended to enhance nursing students' dermatology skills and clinical skin assessment.
Improvements in symptomatic experience and health-related quality of life (HRQoL) are among the most important treatment benefits in patients with eosinophilic esophagitis (EoE). We assessed the impact of dupilumab treatment on HRQoL, patients' impression of dysphagia, and symptoms beyond dysphagia in adults/adolescents (≥12 years) with EoE in parts A and B of the LIBERTY EoE TREET (NCT03633617) study. The EoE Symptom Questionnaire (EoE-SQ; frequency and severity of nondysphagia symptoms), EoE Impact Questionnaire (impact of EoE on HRQoL), and Patient Global Impression of Severity and Patient Global Impression of Change of dysphagia were used to assess the efficacy of weekly dupilumab 300 mg vs placebo. At week 24, dupilumab reduced EoE-SQ Frequency (least squares mean difference vs placebo [95% confidence interval] part A -1.7 [-2.9, -0.5], part B -1.4 [-2.3, -0.5]; both P < 0.01) and EoE-SQ Severity (part A -2.0 [-3.9, 0.0], P < 0.05, part B -1.5 [-3.0, 0.1], P = 0.07) overall scores, and improved scores across all individual items. Improvement in the dupilumab group was clinically meaningful to patients. Dupilumab also meaningfully improved EoE Impact Questionnaire average scores and improved individual item scores at week 24, particularly emotional and sleep disturbance. More dupilumab-treated patients reported improvement in the Patient Global Impression of Change of dysphagia vs placebo or reported having no symptoms per the Patient Global Impression of Severity of dysphagia at week 24. Dupilumab reduced the impact of EoE on multiple aspects of HRQoL, patients' impression of dysphagia, and frequency and severity of symptoms beyond dysphagia in adults/adolescents with EoE.
Eosinophilic esophagitis (EoE) has a detrimental effect on health-related quality of life (HRQOL). The Eosinophilic Esophagitis Impact Questionnaire (EoE-IQ) is a novel patient-reported outcome (PRO) measure assessing the impact of EoE on HRQOL. To assess suitability of the EoE-IQ, its measurement properties were evaluated. Using baseline and week 24 data from the pivotal, randomized, placebo-controlled, multinational phase 3 R668-EE-1774 trial (NCT03633617) of dupilumab, we evaluated EoE-IQ's measurement properties (including reliability, construct and known-groups validity, and ability to detect change) and established the threshold for change in scores that can be considered clinically meaningful. The analysis population comprised 239 adults and adolescents with EoE. Mean age was 28.1 (standard deviation, 13.14) years; 63.6% were male, and 90.4% were White. Reliability estimates for the EoE-IQ average score exceeded acceptable thresholds for patients who were stable as indicated by ratings of Patient Global Impression of Severity (PGIS) and Change (PGIC) (intraclass correlation coefficients, 0.75 and 0.81). Construct validity correlations with other EoE-specific PRO scores were moderate at baseline (|r|= 0.44-0.60) and moderate to strong at week 24 (|r|= 0.61-0.72). In known-groups analysis, EoE-IQ average score discriminated among groups of patients at varying EoE severity levels defined by PGIS scores. A ≥ 0.6-point reduction in EoE-IQ average score (where scores range from 1 to 5, with higher scores indicating worse HRQOL) from baseline to week 24 can be considered clinically meaningful. The EoE-IQ's measurement properties are acceptable, making it a valid, reliable measure of the HRQOL impacts of EoE among adults and adolescents. ClinicalTrials.gov, NCT03633617. Registered August 14, 2018, https://clinicaltrials.gov/study/NCT03633617 .
COVID-19 has challenged health services throughout the world in terms of hospital capacity and put staff and vulnerable populations at risk of infection. In the face of these challenges, many health providers have implemented remote patient monitoring (RPM) of COVID-19 patients in their own homes. However systematic reviews of the literature on these implementations have revealed wide variations in how RPM is implemented; along with variations in particulars of RPM reported on, making comparison and evaluation difficult. A review of reported items is warranted to develop a framework of key items to enhance reporting consistency. The aims of this review of remote monitoring for COVID-19 patients are twofold: (1) to facilitate comparison between RPM implementations by tabulating information and values under common domains. (2) to develop a reporting framework to enhance reporting consistency. A review of the literature for RPM for COVID-19 patients was conducted following PRISMA guidelines. The Medline database was searched for articles published between 2020 to February 2023 and studies reporting on items with sufficient detail to compare one with another were included. Relevant data was extracted and synthesized by the lead author. Quality appraisal was not conducted as the the articles considered were evaluated as informational reports of clinical implementations rather than as studies designed to answer a research question. From 305 studies retrieved, 23 studies were included in the review: fourteen from the US, two from the UK and one each from Africa, Ireland, China, the Netherlands, Belgium, Australia and Italy. Sixteen generally reported items were identified, shown with the percentage of studies reporting in brackets: Reporting Period (82%), Rationale (100%), Patients (100%), Medical Team (91%) Provider / Infrastructure (91%), Communications Platform (100%), Patient Equipment (100%), Training (48%), Markers (96%), Frequency of prompt / Input (96%),Thresholds (82%), Discharge (61%), Enrolled (96%), Alerts/Escalated (78%), Patient acceptance (43%), and Patient Adherence (52%). Whilst some studies reported on patient training and acceptance, just one reported on staff training and none on staff acceptance. Variations in reported items were found. Pending the establishment of a robust set of reporting guidelines, we propose a reporting framework consisting of eighteen reporting items under the following four domains: Context, Technology, Process and Metrics.
In this, the 11th Annual Research Review, I have been pleased to work with an outstanding group of contributors. As in past issues of the Annual Research Review the aim is to provide our readers with reviews that update both current knowledge and research findings. Authors are asked to be selective, rather than comprehensive, in their coverage as they identify the issues that they feel are particularly important for future research. I am grateful not only to the authors but to the numerous referees who provided critiques of each paper. In the first paper in this issue David Skuse provides an update on the relevance of behavioural neuroscience to child psychopathology. This paper provides a thoughtful review of the findings of the past decade and outlines possible directions for future research developments; it appears that we are poised for a major explosion of knowledge in this area. In the second paper Robin Chapman provides a very useful review of recent research on language development. This paper provides an update of Dorothy Bishop's earlier review of the topic and illustrates the considerable progress made since the time of that review. In the third paper Eilish Gilvarry summarises recent research on substance abuse in young people. This review covers recent changes in trends and patterns of substance abuse, aspects of risk and comorbidity, and treatment. Brown and colleagues then review recent work on children and adolescents with HIV and AIDS; this global health problem presents unique issues relative both to research and intervention. Danya Glaser then provides an overview of recent work on child abuse and neglect and the brain; the attempt to bring the various perspectives of neuroscience together on this topic is particularly timely and appropriate. Finally, Sparrow and Davis provide an overview of recent advances in the assessment of intelligence. This paper provides a helpful summary of current perspectives on the assessment of intelligence; the review of instruments will be of particular interest to our readers. For the 12th edition of the Annual Research Review we anticipate coverage of the following topics: intersubjectivity, reading disability, longitudinal approaches to developmental data, mental retardation, conduct disorder, and psychopharmacology.
Eilish Rose Jukes was a healthy 3 1/2 year old. She contracted chicken pox mid April 2005 and recovered unremarkably, although her attention span and behaviour were out of character afterward.
We report a consanguineous Sudanese family whose two affected sons presented with a lethal disorder characterised by severe neonatal lactic acidosis, hypertonia, microcephaly and intractable seizures. One child had additional unique features of periventricular calcification, abnormal pterins and dry thickened skin. Exome enrichment was performed on pooled genomic libraries from the two affected children and sequenced on an Illumina HiSeq2000. After quality control and variant identification, rare homozygous variants were prioritised. Respiratory chain complex activities were measured and normalised to citrate synthase activity in cultured patient fibroblasts. RMND1 protein levels were analysed by standard Western blotting. Exome sequencing identified a previously reported homozygous missense variant in RMND1 (c.1250G>A; p.Arg417Gln), the gene associated with combined oxidation phosphorylation deficiency 11 (COXPD11), as the most likely cause of this disorder. This finding suggests the presence of a mutation hotspot at cDNA position 1250. Patient fibroblasts showed a severe decrease in mitochondrial respiratory chain complex I, III and IV activities and protein expression, albeit with normal RMND1 levels, supporting a generalised disorder of mitochondrial translation caused by loss of function. The current study implicates RMND1 in the development of calcification and dermatological abnormalities, likely due to defective ATP-dependent processes in vascular smooth muscle cells and skin. Review of reported patients with RMND1 mutations shows intra-familial variability and evidence of an evolving phenotype, which may account for the clinical variability. We suggest that COXPD11 should be considered in the differential for patients with calcification and evidence of a mitochondrial disorder.
Adolescent substance abuse, with its heterogeneity, its complexity and its association with behavioural, physical and mental health problems is of increasing interest to many; the politician, the economist, clinicians and researchers, families and young people themselves. Data concerning the prevalence and trends in use of a range of substances in different countries, cultures and different groups are reviewed. The influence of associated mental and physical health problems, the multiple definitions applied to use and abuse and the confounding effect of different ideologies and cultural differences are considered. There is now much interest in the understanding of risk and protective influences, including multi focused prevention programmes among vulnerable young people. Some positive effects of universal prevention programmes are reported, although too often they lack thoroughness in programme implementation, data collection and follow up. Indeed compared to the adult addiction literature there is a death of research on adolescent treatment outcomes. Research needs to address treatment and cost effectiveness in different settings with different groups. The evidence tends to support multi faceted interventions for high risk youths. However, the use of evidence based programmes with a scientific basis should be supported and implemented.
Millennium Development Goal (MDG) 5 commits us to reducing maternal mortality rates by three quarters and MDG 4 commits us to reducing child mortality by two-thirds between 1990 and 2015. In order to reach these goals, greater access to basic emergency obstetric care (EmOC) as well as comprehensive EmOC which includes safe Caesarean section, is needed.. The limited capacity of health systems to meet demand for obstetric services has led several countries to utilize mid-level cadres as a substitute to more extensively trained and more internationally mobile healthcare workers. Although this does provide greater capacity for service delivery, concern about the performance and motivation of these workers is emerging. We propose that poor leadership characterized by inadequate and unstructured supervision underlies much of the dissatisfaction and turnover that has been shown to exist amongst these mid-level healthcare workers and indeed health workers more generally. To investigate this, we conducted a large-scale survey of 1,561 mid-level cadre healthcare workers (health workers trained for shorter periods to perform specific tasks e.g. clinical officers) delivering obstetric care in Malawi, Tanzania, and Mozambique. Participants indicated the primary supervision method used in their facility and we assessed their job satisfaction and intentions to leave their current workplace. In all three countries we found robust evidence indicating that a formal supervision process predicted high levels of job satisfaction and low intentions to leave. We find no evidence that facility level factors modify the link between supervisory methods and key outcomes. We interpret this evidence as strongly supporting the need to strengthen leadership and implement a framework and mechanism for systematic supportive supervision. This will promote better job satisfaction and improve the retention and performance of obstetric care workers, something which has the potential to improve maternal and neonatal outcomes in the countdown to 2015.
Regular supportive supervision is critical to retaining and motivating staff in resource-constrained settings. Previous studies have shown the particular contribution that supportive supervision can make to improving job satisfaction amongst over-stretched health workers in such settings. The Support, Train and Empower Managers (STEM) study designed and implemented a supportive supervision intervention and measured its' impact on health workers using a controlled trial design with a three-arm pre- and post-study in Niassa Province in Mozambique. Post-intervention interviews with a small sample of health workers were also conducted. The quantitative measurements of job satisfaction, emotional exhaustion and work engagement showed no statistically significant differences between end-line and baseline. The qualitative data collected from health workers post the intervention showed many positive impacts on health workers not captured by this quantitative survey. Health workers perceived an improvement in their performance and attributed this to the supportive supervision they had received from their supervisors following the intervention. Reports of increased motivation were also common. An unexpected, yet important consequence of the intervention, which participants directly attributed to the supervision intervention, was the increase in participation and voice amongst health workers in intervention facilities.
We believe junior doctors are in a unique position in relation to reporting of incidents and safety culture. They are still in training and are also 'fresh eyes' on the system providing valuable insights into what they perceive as safe and unsafe behaviour. The aim of this study was to co-design and implement an embedded learning intervention - a serious board game - to educate junior doctors about patient safety and the importance of reporting safety concerns, while at the same time shaping a culture of responsiveness from senior medical staff. A serious game based on the PlayDecide framework was co-designed and implemented in two large urban acute teaching hospitals. To evaluate the educational value of the game voting on the position statements was recorded at the end of each game by a facilitator who also took notes after the game of key themes that emerged from the discussion. A sample of players were invited on a voluntary basis to take part in semi-structured interviews after playing the game using Flanagan's Critical Incident Technique. A paper-based questionnaire on 'Safety Concerns' was developed and administered to assess pre-and post-playing the game reporting behaviour. Dissemination workshops were held with senior clinicians to promote more inclusive leadership behaviours and responsiveness to junior doctors raising of safety concerns from senior clinicians. The game proved to be a valuable patient safety educational tool and proved effective in encouraging deep discussion on patient safety. There was a significant change in the reporting behaviour of junior doctors in one of the hospitals following the intervention. In healthcare, limited exposure to patient safety training and narrow understanding of safety compromise patients lives. The existing healthcare system needs to value the role that junior doctors and others could play in shaping a positive safety culture where reporting of all safety concerns is encouraged. Greater efforts need to be made at hospital level to develop a more pro-active safe and just culture that supports and encourages junior doctors and ultimately all doctors to understand and speak up about safety concerns.
Research on team effectiveness in healthcare has focussed on whether effective teams yield positive outcomes for patients and on the effectiveness of team interventions to improve performance. Limited understanding exists of what works for whom within an effective team, or how and why the context in which the team operates enables team members both as individuals and as a collective to enact behaviours that promote positive outcomes. This realist synthesis of the literature explores the relationship between team interventions, underlying teamwork mechanisms generated by those interventions, and the resultant impact on patient outcomes in an acute hospital context. A systematic search of five healthcare and healthcare management academic databases: PubMed, PsychINFO, CINAHL, ABInform, Emerald Management and three grey literature databases: ERIC, OpenDOAR and Open Grey was undertaken. Five experts in the field were also contacted to source relevant literature. Using PRISMA guidelines, relevant studies published between January 2006 and January 2017 were systematically searched by a team of three people. Drawing on realist methodology, data were synthesised using context, mechanism and outcome configurations as the unit of analysis to identify enablers and barriers to effective team interventions. Out of 3347 papers retrieved, 18 were included in the final synthesis. From these, five contextual enablers were identified: an inter-disciplinary focus and flattened hierarchy; effective communication; leadership support and alignment of team goals with organisational goals; credibility of intervention; and appropriate team composition with physician involvement. Ten recurring mechanisms were identified, the most frequently occurring of which was shared responsibility. The advantage of using realist synthesis to extrapolate data from the literature is that it considers the context and mechanisms that will impact effectiveness of healthcare team interventions. This methodological approach provides a different perspective to other types of syntheses and offers insight as to why certain contextual elements may yield more success than others. Findings therefore tend to have more practical implications. Specificity of detail in terms of how external drivers impact on healthcare team interventions was limited in the articles extracted for analysis. This broader perspective is therefore an important consideration for future research.
Social network analysis (SNA) is a term that describes a set of methodologies to understand and depict social relations or ties. SNA is different from other research methods in several ways that have important ethical implications, as well as specific considerations for study design. Recruitment of participants and attrition during the study, where there are several data collection time points, pose significant challenges. Furthermore, there are implications of non-participation in studies, whereby gaps in network maps may result in an inaccurate representation of how a network is working and this, in turn, means the results may be of lesser value in terms of informing policy and practice. Given the widely noted challenge of recruiting healthcare staff to research, this paper adopts a case study approach to discussing considerations for researchers, as well as offering recommendations and insights from our own research and from the published literature about how to tackle these issues. This paper examines data sourcing, decision-making about defining the network for data collection, and ethical considerations and their implications for the recruitment of healthcare staff to social network studies. We use a case study example exploring leadership in a hospital group network to illustrate techniques and challenges in the recruitment of healthcare staff.
Shortages of staff have a significant and negative impact on maternal outcomes in low-income countries, but the impact on obstetric care providers in these contexts is less well documented. Despite the government of Malawi's efforts to increase the number of human resources for health, maternal mortality rates remain persistently high. Health workers' perceptions of insufficient staff or time to carry out their work can predict key variables concerning motivation and attrition, while the resulting sub-standard care and poor attitudes towards women dissuade women from facility-based delivery. Understanding the situation from the health worker perspective can inform policy options that may contribute to a better working environment for staff and improved quality of care for Malawi's women. A qualitative research design, using critical incident interviews, was used to generate a deep and textured understanding of participants' experiences. Eligible participants had performed at least one of the emergency obstetric care signal functions (a) in the previous three months and had experienced a demotivating critical incident within the same timeframe. Data were analysed using NVivo software. Eighty-four interviews were conducted. Concerns about staff shortages and workload were key factors for over 40% of staff who stated their intention to leave their current post and for nearly two-thirds of the remaining health workers who were interviewed. The main themes emerging were: too few staff, too many patients; lack of clinical officers/doctors; inadequate obstetric skills; undermining performance and professionalism; and physical and psychological consequences for staff. Underlying factors were inflexible scheduling and staff allocations that made it impossible to deliver quality care. This study revealed the difficult circumstances under which maternity staff are operating and the professional and emotional toll this exacts. Systems failures and inadequate human resource management are key contributors to the gaps in provision of obstetric care and need to be addressed. Thoughtful strategies that match supply to demand, coupled with targeted efforts to support health workers, are necessary to mitigate the effects of working in this context and to improve the quality of obstetric care for women in Malawi.
Gram-negative complicated urinary tract infections (cUTIs) can have serious consequences for patients and hospitals. To examine the clinical and economic burden attributable to Gram-negative carbapenem-non-susceptible (C-NS; resistant/intermediate) infections compared with carbapenem-susceptible (C-S) infections in 78 US hospitals. All non-duplicate C-NS and C-S urine source isolates were analysed. A subset had principal diagnosis ICD-9-CM codes denoting cUTI. Collection time (<3 vs ≥3 days after admission) determined isolate classification as community or hospital onset. Mortality, 30-day re-admissions, length of stay (LOS), hospital cost and net gain/loss in US dollars were determined for C-NS and C-S cases, with the C-NS-attributable burden estimated through propensity score matching. Three subgroups with adequate patient numbers were analysed: cUTI principal diagnosis, community onset; other principal diagnosis, community onset; and other principal diagnosis, hospital onset. The C-NS-attributable mortality risk was significantly higher (58%) for the other principal diagnosis, hospital-onset subgroup alone (odds ratio 1.58, 95% confidence interval 1.14-2.20; P < 0.01). The C-NS-attributable risk for 30-day re-admission ranged from 29% to 55% (all P < 0.05). The average attributable economic impact of C-NS was 1.1-3.9 additional days LOS (all P < 0.05), US$1512-10,403 additional total cost (all P < 0.001) and US$1582-11,848 net loss (all P < 0.01); overall burden and C-NS-attributable burden were greatest in the other principal diagnosis, hospital-onset subgroup. Greater clinical and economic burden was observed in propensity-score-matched patients with C-NS infections compared with C-S infections, regardless of whether cUTI was the principal diagnosis, and this burden was most severe in hospital-onset infections.
Task shifting from established health professionals to mid-level providers (MLPs) (professionals who undergo shorter training in specific procedures) is one key strategy for reducing maternal and neonatal deaths. This has resulted in a growth in cadre types providing obstetric care in low and middle-income countries. Little is known about the relative importance of the different factors in determining motivation and retention amongst these cadres. This paper presents findings from large sample (1972 respondents) discrete choice experiments to examine the employment preferences of obstetric care workers across three east African countries. The strongest predictors of job choice were access to continuing professional development and the presence of functioning human resources management (transparent, accountable and consistent systems for staff support, supervision and appraisal). Consistent with similar works we find pay and allowances significantly positively related to utility, but financial rewards are not as fundamental a factor underlying employment preferences as many may have previously believed. Location (urban vs rural) had the smallest average effect on utility for job choice in all three countries. These findings are important in the context where efforts to address the human resources crisis have focused primarily on increasing salaries and incentives, as well as providing allowances to work in rural areas.