'It's not meant to be for life, but it carries on': a qualitative investigation into the psychosocial needs of young retinoblastoma survivors.

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.

Experiences and support needs of parents/caregivers of children with cancer through the COVID-19 pandemic in the UK: a longitudinal study.

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.

Can I go home now? The safety and efficacy of a new UK paediatric febrile neutropenia protocol for risk-stratified early discharge on oral antibiotics.

OBJECTIVE: To evaluate a new protocol of risk stratification and early discharge for children with febrile neutropenia (FN). DESIGN: Prospective service evaluation from 17 April 2020 to 16 April 2021. SETTING: 13 specialist centres in the UK. PATIENTS: 405 children presenting with FN. INTERVENTION: All children received intravenous antibiotics at presentation. Risk stratification was determined using the Australian-UK-Swiss (AUS) rule and eligibility for homecare assessed using criteria including disease, chemotherapy, presenting features and social factors. Those eligible for homecare could be discharged on oral antibiotics after a period of observation proportional to their risk group. MAIN OUTCOME MEASURES: Median duration of admission and of intravenous antibiotics, and percentage of patients with positive blood cultures, significant infection, readmission within 7 days of initial presentation, intensive care unit (ICU) admission, death from infection and death from other causes. RESULTS: 13 centres contributed 729 initial presentations of 405 patients. AUS rule scores were positively correlated with positive blood cultures, significant infection, ICU admission and death. 20% of children were eligible for homecare with oral antibiotics, of which 55% were low risk (AUS 0-1). 46% low-risk homecare eligible patients were discharged by 24 hours vs 2% homecare ineligible. Homecare readmission rates were 14% overall and 16% for low-risk cases (similar to a meta-analysis of previous studies). No child eligible for homecare was admitted to ICU or died. CONCLUSIONS: Use of the AUS rule and homecare criteria allow for safe early outpatient management of children with FN.

Research priorities for children's cancer: a James Lind Alliance Priority Setting Partnership in the UK.

OBJECTIVES: To engage children who have experienced cancer, childhood cancer survivors, their families and professionals to systematically identify and prioritise research questions about childhood cancer to inform the future research agenda. DESIGN: James Lind Alliance Priority Setting Partnership. SETTING: UK health service and community. METHODS: A steering group oversaw the initiative. Potential research questions were collected in an online survey, then checked to ensure they were unanswered. Shortlisting via a second online survey identified the highest priority questions. A parallel process with children was undertaken. A final consensus workshop was held to determine the Top 10 priorities. PARTICIPANTS: Children and survivors of childhood cancer, diagnosed before age 16, their families, friends and professionals who work with this population. RESULTS: Four hundred and eighty-eight people submitted 1299 potential questions. These were refined into 108 unique questions; 4 were already answered and 3 were under active study, therefore, removed. Three hundred and twenty-seven respondents completed the shortlisting survey. Seventy-one children submitted questions in the children's surveys, eight children attended a workshop to prioritise these questions. The Top 5 questions from children were taken to the final workshop where 23 questions in total were discussed by 25 participants (young adults, carers and professionals). The top priority was 'can we find effective and kinder (less burdensome, more tolerable, with fewer short and long-term effects) treatments for children with cancer, including relapsed cancer?' CONCLUSIONS: We have identified research priorities for children's cancer from the perspectives of children, survivors, their families and the professionals who care for them. Questions reflect the breadth of the cancer experience, including diagnosis, relapse, hospital experience, support during/after treatment and the long-term impact of cancer. These should inform funding of future research as they are the questions that matter most to the people who could benefit from research.

PAnTher Cub: procalcitonin-guided antibiotic therapy for febrile neutropenia in children and young people with cancer - a single-arm pilot study.

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.

The impact of the COVID-19 pandemic on the research activity and working experience of clinical academics, with a focus on gender and ethnicity: a qualitative study in the UK.

OBJECTIVE: To investigate the impact of the COVID-19 pandemic on the research activity and working experience of clinical academics, with a focus on gender and ethnicity. DESIGN: Qualitative study based on interviews and audio/written diary data. SETTING: UK study within clinical academia. PARTICIPANTS: Purposive sample of 82 clinical academics working in medicine and dentistry across all career stages ranging from academic clinical fellows and doctoral candidates to professors. METHODS: Qualitative semistructured interviews (n=68) and audio diary data (n=30; including 16 participants who were also interviewed) collected over an 8-month period (January-September 2020), thematically analysed. RESULTS: 20 of 30 (66.6%) audio diary contributors and 40 of 68 (58.8%) interview participants were female. Of the participants who disclosed ethnicity, 5 of 29 (17.2%) audio diary contributors and 19/66 (28.8%) interview participants identified as Black, Asian or another minority (BAME). Four major themes were identified in relation to the initial impact of COVID-19 on clinical academics: opportunities, barriers, personal characteristics and social identity, and fears and uncertainty. COVID-19 presented opportunities for new avenues of research. Barriers included access to resources to conduct research and the increasing teaching demands. One of the most prominent subthemes within 'personal characteristics' was that of the perceived negative impact of the pandemic on the work of female clinical academics. This was attributed to inequalities experienced in relation to childcare provision and research capacity. Participants described differential experiences based upon their gender and ethnicity, noting intersectional identities. CONCLUSIONS: While there have been some positives afforded to clinical academics, particularly for new avenues of research, COVID-19 has negatively impacted workload, future career intentions and mental health. BAME academics were particularly fearful due to the differential impact on health. Our study elucidates the direct and systemic discrimination that creates barriers to women's career trajectories in clinical academia. A flexible, strategic response that supports clinical academics in resuming their training and research is required. Interventions are needed to mitigate the potential lasting impact on capacity from the pandemic, and the potential for the loss of women from this valuable workforce.

Strengthening the clinical academic pathway: a systematic review of interventions to support clinical academic careers for doctors and dentists.

OBJECTIVE: Evaluate existing evidence on interventions intended to increase recruitment, retention and career progression within clinical academic (CA) careers, including a focus on addressing inequalities. DESIGN: Systematic review. DATA SOURCES: Medline, Embase, Cochrane Controlled Register of Trials, PsycINFO and Education Resource Information Center searched October 2019. STUDY SELECTION: Eligible studies included qualified doctors, dentists and/or those with a supervisory role. Outcomes were defined by studies and related to success rates of joining or continuing within a CA career. DATA EXTRACTION AND SYNTHESIS: Abstract screening was supported by machine learning software. Full-text screening was performed in duplicate, and study quality was assessed. Narrative synthesis of quantitative data was performed. Qualitative data were thematically analysed. RESULTS: 148 studies examined interventions; of which 28 were included in the quantitative synthesis, 17 in the qualitative synthesis and 2 in both. Studies lacked methodological rigour and/or were hindered by incomplete reporting. Most were from North America. No study included in the syntheses evaluated interventions aimed at CA dentists.Most quantitative evidence was from multifaceted training programmes. These may increase recruitment, but findings were less clear for retention and other outcomes. Qualitative studies reported benefits of supportive relationships, including peers and senior mentors. Protected time for research helped manage competing demands on CAs. Committed and experienced staff were seen as key facilitators of programme success. Respondents identified several other factors at a programme, organisational or national level which acted as facilitators or barriers to success. Few studies reported on the effects of interventions specific to women or minority groups. CONCLUSIONS: Existing research is limited by rigour and reporting. Better evaluation of future interventions, particularly those intended to address inequalities, is required. Within the limits of the evidence, comprehensive multifaceted programmes of training, including protected time, relational and support aspects, appear most successful in promoting CA careers. SYSTEMATIC REVIEW REGISTRATION: Open Science Framework: https://osf.io/mfy7a.

Individual participant data validation of the PICNICC prediction model for febrile neutropenia.

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.