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Objective: To explore the experiences, information and support needs of parents/caregivers of children with cancer and how these changed as the COVID-19 pandemic evolved.Design: Online surveys containing closed and free-text questions on experiences, information and support needs were completed at four time points (between April 2020 and October 2021) during the COVID-19 pandemic. Descriptive statistics of closed items and content analysis of qualitative data were conducted.Setting: Online.Participants: Parents/caregivers of children with cancer.Results: 335 parents/caregivers completed the survey over four time points. Findings revealed that parents'/caregivers' worry about the virus and vigilance about their child's virus symptoms decreased over time. Parents reporting the need for support on how to reduce their worries and/or family members during the virus outbreak were low, however parents reported a slight increase in need for support at T3 when schools reopened. Qualitative findings reported the following themes: (1) Psychological well-being of parents/caregivers, (2) Changing perceptions of risks/priorities, (3) Adjusting to COVID-19: Living with continued caution, (4) Healthcare and treatment provision, (5) Information seeking and needs during COVID-19.Conclusions: The COVID-19 pandemic disrupted people's lives and routines in relation to access to support, finances, education and social lives, leading to psychological distress. Parents highlighted the need for timely, up-to-date and personalised information in relation to COVID-19 and their child with cancer. Further consideration of the development of technology-based health solutions may provide an efficient and safe way to connect with and support parent/caregivers. [ABSTRACT FROM AUTHOR]

Background: Risk-stratified approaches to managing cancer therapies and their consequent complications rely on accurate predictions to work effectively. The risk-stratified management of fever with neutropenia is one such very common area of management in paediatric practice. Such rules are frequently produced and promoted without adequate confirmation of their accuracy.Methods: An individual participant data meta-analytic validation of the 'Predicting Infectious ComplicatioNs In Children with Cancer' (PICNICC) prediction model for microbiologically documented infection in paediatric fever with neutropenia was undertaken. Pooled estimates were produced using random-effects meta-analysis of the area under the curve-receiver operating characteristic curve (AUC-ROC), calibration slope and ratios of expected versus observed cases (E/O).Results: The PICNICC model was poorly predictive of microbiologically documented infection (MDI) in these validation cohorts. The pooled AUC-ROC was 0.59, 95% CI 0.41 to 0.78, tau2=0, compared with derivation value of 0.72, 95% CI 0.71 to 0.76. There was poor discrimination (pooled slope estimate 0.03, 95% CI -0.19 to 0.26) and calibration in the large (pooled E/O ratio 1.48, 95% CI 0.87 to 2.1). Three different simple recalibration approaches failed to improve performance meaningfully.Conclusion: This meta-analysis shows the PICNICC model should not be used at admission to predict MDI. Further work should focus on validating alternative prediction models. Validation across multiple cohorts from diverse locations is essential before widespread clinical adoption of such rules to avoid overtreating or undertreating children with fever with neutropenia. [ABSTRACT FROM AUTHOR]

Objective and Design: Retinoblastoma (Rb) is a rare childhood eye cancer, with 45% of individuals impacted by heritable disease and the remainder impacted non-heritably. The condition can leave survivors with life-long psychological and social challenges. This qualitative study examined the psychosocial needs of teenagers and young adults living beyond Rb., Setting: A qualitative, exploratory study was conducted using focus groups with teenagers and interviews with young adults. Participants were recruited via the Childhood Eye Cancer Trust and the two national Rb treatment centres in the UK. Reflexive thematic analysis was used to analyse data using exploratory and inductive methods., Participants: 32 young survivors of Rb (10 heritable, 21 non-heritable, 1 unknown; 23 unilateral, 9 bilateral) aged between 13 and 29 years (12 male, 20 female)., Results: Data were rich and spanned the life course: three key themes were generated, containing eight subthemes. Theme 1 describes participants' experiences of childhood and trauma, including survivor guilt, memories from treatment and impact on personality. Theme 2 focuses on the challenges of adolescence, including the psychological impact of Rb, the impact on identity, and the sense of normality and adaptation to late effects. The third theme considered adulthood and the development of acceptance, a state of being widely considered unachievable during childhood, as well as the 'work' needed to feel supported, including seeking out information, peer support and therapeutic strategies., Conclusions: This study provides in-depth insight into the experiences of life beyond Rb. Findings highlight the need for specific psychosocial interventions informed by codesign., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2024. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Background: Febrile neutropenia (FN) is a common complication of cancer treatment in children and young people, and many episodes are over-treated. Procalcitonin, may be an appropriate tool to guide the stopping of antibiotics in those at low risk of serious bacterial infection. Supportive care trials in this population have proven to be difficult to undertake. This single-arm pilot study aimed to evaluate whether a study using a procalcitonin-guided stopping-rule for antibiotics in paediatric FN is possible., Methods: Daily procalcitonin levels were performed during episodes of FN and clear guidance given for antibiotic discontinuation. Episode data and quantitative feasibility data were collected alongside interviews with professionals and ethnographic observations. Analysis was descriptive., Results: Of 32 patients and families approached, 28 patients consented, and 13 had febrile neutropenia. In total, 16 episodes were included in the study. All relevant FN episodes had data captured, with adequate data collection. There were no significant safety events. In 4/8 (50%) of episodes without clear microbiologically documented or clinical infection, antibiotics were reduced in duration or in spectrum. Interviews with professionals revealed the importance of the research, the value of key individuals in the study team, particular challenges of this protocol and suggestions for study improvements., Conclusions: Studies to evaluate procalcitonin-guided approaches to stopping antibiotics in paediatric FN are possible., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2022. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)