Quality of life of long-term childhood acute lymphoblastic leukemia survivors: Comparison with healthy controls.

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. Controls were unhappiest compared to survivors with Money, Love life, Self-esteem, Nutrition and Paid Work. CONCLUSIONS: Our findings suggest that survivors of childhood ALL have better QoL outcomes on some domains compared to the general population, specifically around social and emotional functioning, and that they tend to prioritize their relationships more. Interventions for improving QoL outcomes, might build on existing positive experiences with family, friends and partners.

COVID-19: experiences of lockdown and support needs in children and young adults with kidney conditions.

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.

Views and Needs of Students, Parents, and Teachers on Closed-Circuit Television, Proximity Trackers, and Access Cards to Facilitate COVID-19 Contact Tracing in Schools: Thematic Analysis of Focus Groups and Interviews.

BACKGROUND: Contact tracing is considered a key measure in preventing the spread of infectious diseases. Governments around the world adopted contact tracing to limit the spread of COVID-19 in schools. Contact tracing tools utilizing digital technology (eg, GPS chips, Bluetooth radios) can increase efficiency compared to manual methods. However, these technologies can introduce certain privacy challenges in relation to retention, tracking, and the using and sharing of personal data, and little is known about their applicability in schools. OBJECTIVE: This is the second of two studies exploring the potential of digital tools and systems to help schools deal with the practical challenges of preventing and coping with an outbreak of COVID-19. The aim was to explore the views, needs, and concerns among secondary school stakeholders (parents, teachers, pupils) regarding the implementation of three digital tools for contact tracing: access cards, proximity tracking, and closed-circuit television (CCTV). METHODS: Focus groups and interviews were conducted with secondary school students, parents, and teachers. The topic guide was informed by the Unified Theory of Technology and Acceptance. Data-driven and theory-driven approaches were combined to identify themes and subthemes. RESULTS: We recruited 22 participants. Findings showed that there is no single solution that is suitable for all schools, with each technology option having advantages and limitations. Existing school infrastructure (eg, CCTV and smart/access cards technology) and the geography of each school would determine which tools would be optimal for a particular school. Concerns regarding the cost of installing and maintaining equipment were prominent among all groups. Parents and teachers worried about how the application of these solutions will affect students' right to privacy. Parents also appeared not to have adequate knowledge of the surveillance technologies already available in schools (eg, CCTV). Students, who were mostly aware of the presence of surveillance technologies, were less concerned about any potential threats to their privacy, while they wanted reassurances that any solutions would be used for their intended purposes. CONCLUSIONS: Findings revealed that there is not one tool that would be suitable for every school and the context will determine which tool would be appropriate. This study highlights important ethical issues such as privacy concerns, balancing invasions of privacy against potential benefits, transparency of communication around surveillance technology and data use, and processes of consent. These issues need to be carefully considered when implementing contact tracing technologies in school settings. Communication, transparency, and consent within the school community could lead to acceptance and engagement with the new tools.

Design and Evaluation of an Intensive Care Unit Dashboard Built in Response to the COVID-19 Pandemic: Semistructured Interview Study.

BACKGROUND: Dashboards and interactive displays are becoming increasingly prevalent in most health care settings and have the potential to streamline access to information, consolidate disparate data sources and deliver new insights. Our research focuses on intensive care units (ICUs) which are heavily instrumented, critical care environments that generate vast amounts of data and frequently require individualized support for each patient. Consequently, clinicians experience a high cognitive load, which can translate to suboptimal performance. The global COVID-19 pandemic exacerbated this problem by generating a large number of additional hospitalizations, which necessitated a new tool that would help manage ICUs' census. In a previous study, we interviewed clinicians at the University Hospitals Bristol and Weston National Health Service Foundation Trust to capture the requirements for bespoke dashboards that would alleviate this problem. OBJECTIVE: This study aims 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, such as those seen during the COVID-19 pandemic. METHODS: Building upon the previously gathered requirements, we developed a dashboard, integrated it within the ICU of a National Health Service 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 semistructured interviews followed a topic guide aimed at capturing the usability of the dashboard, supplemented with additional questions asked post hoc to probe themes established during the interview. Interview transcripts were analyzed using a thematic analysis framework that combined inductive and deductive approaches and integrated the Technology Acceptance Model. 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) participated in the interviews. Our analysis generated 4 key topics that prevailed across the data: our dashboard met the usability requirements of the participants and was found useful and intuitive; participants perceived that it impacted their delivery of patient care by improving the access to the information and better equipping them to do their job; the tool was used in a variety of ways and for different reasons and tasks; and there were barriers to integration of our dashboard into practice, including familiarity with existing systems, which stifled the adoption of our tool. CONCLUSIONS: Our findings show that the perceived utility of the dashboard had a positive impact on the clinicians' workflows 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.

Using Digital Tools for Contact Tracing to Improve COVID-19 Safety in Schools: Qualitative Study Exploring Views and Experiences Among School Staff.

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.

Sociodemographic and Medical Determinants of Quality of Life in Long-Term Childhood Acute Lymphoblastic Leukemia Survivors Enrolled in EORTC CLG Studies.

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.