Background During the initial COVID-19 pandemic, young United Kingdom (UK) kidney patients underwent lockdown and those with increased vulnerabilities socially isolated or ‘shielded’ at home. The experiences, information needs, decision-making and support needs of children and young adult (CYA) patients or their parents during this period is not well known. Methods A UK-wide online survey co-produced with patients was conducted in May 2020 amongst CYA aged 12–30, or parents of children aged < 18 years with any long-term kidney condition. Participants answered qualitative open text alongside quantitative closed questions. Thematic content analysis using a three-stage coding process was conducted. Results One-hundred and eighteen CYA (median age 21) and 197 parents of children (median age 10) responded. Predominant concerns from CYA were heightened vigilance about viral (68%) and kidney symptoms (77%) and detrimental impact on education or work opportunities (70%). Parents feared the virus more than CYA (71% vs. 40%), and had concerns that their child would catch the virus from them (64%) and would have an adverse impact on other children at home (65%). CYA thematic analysis revealed strong belief of becoming seriously ill if they contracted COVID-19; lost educational opportunities, socialisation and career development; and frustration with the public for not following social distancing rules. Positive outcomes included improved family relationships and community cohesion. Only a minority (14–21% CYA and 20–31% parents, merged questions) desired more support. Subgroup analysis identified greater negative psychological impact in the shielded group. Conclusions This survey demonstrates substantial concern and need for accurate tailored advice for CYA based on individualised risks to improve shared decision making. Graphical abstract

Background: due to increasing survival rates in childhood acute lymphoblastic leukemia (ALL), the number of survivors has been expanding. A significant proportion of these survivors can experience long-term emotional and psychosocial problems. However, the exact risk factors remain inconclusive. We investigated potential risk factors for decreased daily life quality and life challenges in long-term childhood ALL survivors enrolled between 1971 and 1998 in EORTC studies. Methods: self-report questionnaires were collected from 186 survivors (109 females; mean age at diagnosis 5.62 years, range 0.2–14.7; median time since diagnosis of 20.5 years (12.9–41.6)), including the Short-Form Health Survey (SF-12) and Impact of Cancer-Childhood Survivors (IOC-CS). Multivariable linear regression models were used to assess the impact of gender, age at diagnosis, relapse/second neoplasm, National Cancer Institute (NCI) risk group and cranial radiotherapy on 2 subscales of the SF-12 (physical and mental health) and five subscales of the IOC-CS (life challenges, body and health, personal growth, thinking and memory problems and socializing). Results: mental component scores of SF-12 were not significantly associated with any risk factor. Physical component scores were lower in relapsed, irradiated and NCI high-risk patients. Regarding IOC-CS negative impact subscales, life challenges was more negatively impacted by cancer in female, younger (i.e., <6 years) and relapsed patients. Regarding the positive impact scales, personal growth was more positively impacted in relapsed patients, whereas body and health, and socializing, were less positively impacted in these patients, compared to non-relapsed patients. Socializing was more positively impacted in older patients (>6 years). Conclusions: this study demonstrates that long-term outcomes can be both adverse and positive, depending on the patient’s demographic and clinical characteristics. Younger, female, and relapsed patients might encounter more life challenges years after their disease, while physical challenges could occur more often in relapsed and high-risk patients. Finally, the positive effect on socializing in the older patients sheds new light on the importance of peer interactions for this subgroup. Specific individual challenges thus need specialized support for specific subgroups.

Objective: Improved treatment landscape has led to better outcomes for paediatric acute lymphoblastic leukemia (ALL) survivors. As the number of survivors increase, we need to elucidate the long-term quality of life (QoL) and domains of complaints in these patients. Furthermore, the main priorities of these patients need to be clarified. We assessed long-term QoL outcomes of survivors of childhood ALL compared to matched population controls.Methods: QoL data were collected from survivors recruited in France and Belgium between 2012 and 2017, including the Short Form Health Survey (SF-12) and the Quality of Life Systemic Inventory (QLSI). The Wilcoxon test was used to compare SF-12 scale scores between survivors and matched population controls. For the QLSI, comparisons were mainly descriptive.Results: One hundred and eighty-six survivors (mean age: 27.6 years; range: 18.1-52.8) at follow-up completed QoL measures, amongst whom 180 were matched to controls. Overall, survivors had higher QoL on all SF12 scale scores, indicating that they had better functioning compared to controls. Statistically significant differences on the SF12 were observed for Vitality, Social Functioning, Role Limitations due to Emotional Problems and Mental Health scales. QLSI outcomes suggested that survivors were happier than controls with Couple and Social Relations.Anne-Sophie Darlington and Caroline Piette are co-last authors.This is an open access article under the terms of the Creative Commons Attribution License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.

Background Throughout the pandemic, governments worldwide have issued guidelines to manage the spread and impact of COVID-19 in schools, including measures around social distancing and contact tracing. Whether schools required support to implement these guidelines has not yet been explored in depth. Despite the development of a range of technologies to tackle COVID-19, such as contact-tracing apps and electronic vaccine certificates, research on their usefulness in school settings has been limited. Objective The aim of the study was to explore the needs of school staff in managing COVID-19 and their experiences and perspectives on technological support in relation to contact tracing. School staff are the ones likely to make key implementation decisions regarding new technologies, and they are also the ones responsible for using the new tools daily. Including both management staff and class teachers in the development of school-based technologies can lead to their successful adoption by schools. Methods Semistructured interviews were conducted with UK school staff, including primary and secondary school teachers and school managers. Thematic analysis, facilitated by NVivo, was used to analyze the data. Two of the authors independently coded 5 (28%) of the interviews and reached a consensus on a coding framework. Results Via purposive sampling, we recruited 18 participants from 5 schools. Findings showed that primary schools did not perform contact tracing, while in secondary schools, digital seating plans were used to identify close contacts in the classroom and manual investigations were also conducted identify social contacts. Participants reported that despite their efforts, high-risk interactions between students were not adequately monitored. There was a need to improve accuracy when identifying close contacts in common areas where students congregate. Proximity tracking, use of access cards, and closed-circuit television (CCTV) emerged as potential solutions, but there were concerns surrounding false alerts, burden, and security. Conclusions School staff have found it difficult to monitor and implement social distancing and contact-tracing provisions. There are opportunities for mobile digital technologies and CCTV to support school staff in keeping their students and colleagues safe; however, these must place minimal demands on staff and prioritize security measures. Study findings can help researchers and practitioners who work in different contexts and settings understand what particular challenges are faced by school staff, and inform further research on the design and application of digital solutions for contact tracing.

BACKGROUND Dashboards and interactive displays are becoming increasingly present in most healthcare settings and have the potential to streamline access to information, consolidate disparate data sources and deliver new insights such as trends and aggregate patient metrics. In particular, we focus on Intensive Care Units (ICUs) that are heavily instrumented, critical care environments that generate vast amounts of data and frequently require individualised support for each of the patients. As a result, clinicians experience a high cognitive load, which can translate to suboptimal performance. The global COVID-19 Pandemic exacerbated this problem by generating a high number of additional hospitalisations, which necessitated a new tool that would help manage the ICU’s census. In a previous study, we conducted interviews with clinicians at the University Hospitals Bristol and Weston NHS Foundation Trust (UHBW) to capture the requirements for bespoke dashboards that would alleviate this problem. OBJECTIVE The objective of this study was to design, implement and evaluate an ICU dashboard to allow for monitoring of the high volume of patients in need of critical care - particularly tailored to high-demand situations, as those seen during the COVID-19 pandemic. METHODS Building upon the previously gathered design requirements, we developed a dashboard, integrated it within the ICU of an NHS Trust and allowed all staff to access our tool. For evaluation purposes, participants were recruited and interviewed following a 25-day period during which they were able to use the dashboard clinically. The semi-structured interviews followed a topic guide aimed at capturing the usability and usefulness of the dashboard, which was supplemented with additional questions asked post-hoc to probe themes established during the interview. All interviews were transcribed and analysed using a thematic analysis framework which combined inductive and deductive approaches and integrated the Technology Acceptance Model (TAM). RESULTS A total of 10 participants with 4 different roles in the ICU (6 Consultants, 2 Junior Doctors, 1 Nurse and 1 Advanced Clinical Practitioner) took part in the interviews. Our analysis generated 4 key topics that prevailed across the data: (1) our dashboard met the usability requirements of the participants and was found useful and intuitive; (2) participants perceived that it impacted their delivery of patient care - in particular by improving the access to the information and better equipping them to do their job; (3) the tool was used in a variety of ways and for different reasons and tasks; (4) there were barriers to integration of our dashboard into practice, including familiarity with existing systems, which stifled the adoption of our tool. CONCLUSIONS The findings of our study show that the perceived utility of the dashboard had a positive impact on the workflows of the clinicians in the ICU. Improving access to information translated into more efficient patient care and transformed some of the existing processes. The introduction of our tool was met with positive reception, but its integration during the COVID-19 pandemic limited its adoption into practice.