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BACKGROUND: We examined parents' perceptions of their child's oncology care during a period of significant COVID-19 restrictions in Australia. METHODS: Parents of children, 0-18 years, receiving hospital-based cancer treatment, completed a survey examining their COVID-19 exposure and impact, information and knowledge, and perception of their child's medical care. Recruitment occurred between October and November 2020. RESULTS: Eighty-four parents (95% mothers) completed the survey. Sixty-seven percent of patients were diagnosed pre-COVID-19. The majority of parents (76%) reported negative impacts of COVID-19 on family life, including parenting and emotional well-being despite exposure to COVID-19 cases being very low (4%). Family functioning and parent birthplace were associated with COVID-19 impact and distress. Parents perceived the hospital as a safe place during the pandemic. Very few parents reported delaying presentation to the emergency department (12%). The majority identified no change (69%) or delay (71%) in their child's treatment delivery. Over 90% of parents were confident that COVID-19 did not impact medical decision-making. They felt confident in their COVID-19 knowledge and sought information from trusted sources. Parents reported a positive relationship with their child's care team (93%); however, access to some support services was reduced. CONCLUSION: Understanding patient and family experiences of pediatric oncology care across international contexts during the pandemic is important to inform present and future health care responses. In the Australian context of low infection rates and strict community restrictions, parents perceived their child's oncology care to be relatively unaffected. However, findings indicate that family well-being was impacted, which warrants further investigation.

OBJECTIVE: We assessed the acceptability of, and perceived benefits/barriers to, using Electronic health (eHealth) technology for childhood cancer survivorship care. METHODS: We interviewed survivors, their parents, and their nominated GP. We described a hypothetical eHealth tool to manage survivorship care and asked their likely use of, and perceived benefits/concerns for, the use of the tool. RESULTS: 31 survivors (mean age = 27.0), 29 parents (survivors' mean age = 12.6), and 51 GPs (mean years practising = 28.2) participated. Most survivors/parents (85%) and GPs (75%) indicated that they would be willing to use an eHealth tool. Survivors/parents reported that an eHealth tool would increase their confidence in their ability, and their GP's ability, to manage their survivorship care. GPs agreed that an eHealth tool would provide easier access to survivors' medical information and increase their capacity to provide support during survivorship. Some GPs (7%) and survivors (43%) reported being hesitant to use eHealth tools due to privacy/security concerns. CONCLUSION: Overall, eHealth tools appear acceptable and may help to improve the management of late effects for childhood cancer survivors and assist their GPs to coordinate their care. INNOVATION: Concerns raised by key stakeholders should be addressed in the design of eHealth technologies to optimise their uptake and effectiveness.

Context. The chemical pathways linking the small organic molecules commonly observed in molecular clouds to the large, complex, polycyclic species long suspected of being carriers of the ubiquitous unidentified infrared emission bands remain unclear. Aims. To investigate whether the formation of mono- and polycyclic molecules observed in cold cores could form via the bottom-up reaction of ubiquitous carbon-chain species with, for example, atomic hydrogen, a search is made for possible intermediates in data taken as part of the GOTHAM (GBT Observations of TMC-1: Hunting for Aromatic Molecules) project. Methods. Markov chain Monte Carlo (MCMC) source models were run to obtain column densities and excitation temperatures. Astrochemical models were run to examine possible formation routes, including (a) a novel grain-surface pathway involving the hydrogenation of C6N and HC6N, (b) purely gas-phase reactions between C3N and both propyne (CH3CCH) and allene (CH2CCH2), and (c) via the reaction CN + H2CCCHCCH. Results. We report the first detection of cyanoacetyleneallene (H2CCCHC3N) in space toward the TMC-1 cold cloud using the Robert C. Byrd 100 m Green Bank Telescope. Cyanoacetyleneallene may represent an intermediate between less-saturated carbon chains, such as the cyanopolyynes, that are characteristic of cold cores and the more recently discovered cyclic species, such as cyanocyclopentadiene. Results from our models show that the gas-phase allene-based formation route in particular produces abundances of H2CCCHC3N that match the column density of 2 × 1011

BACKGROUND: Few studies haveexamined parent and family adaptation in the early period following the end of childhood cancer treatment. We examined parent adjustment at the end of their child's treatment for acute lymphoblastic leukemia (ALL). METHODS: Parents of childhood cancer survivors (CCS), who were 3 months post-ALL treatment, and parents of typically developing children completed measures of psychological and family functioning. Parents of CCS also completed distress and posttraumatic stress symptom (PTSS) questionnaires related to their child's cancer experience. RESULTS: One hundred twenty-nine parents were recruited: 77 parents of CCS and 52 comparison parents. Overall mean psychological symptoms of depression, anxiety and stress, and family functioning were within normal limits for both groups. Parents of CCS endorsed higher scores for stress, depression, and family problems; however, mean scores for emotional distress were low for both groups, in particular the comparison group. Parents of CCS endorsed low rates of PTSS. Fifty-one percent of parents of CCS scored above the distress thermometer (DT-P) clinical cutoff (>4), with items elevated across all six DT-P domains. However, most parents did not indicate a wish to speak to a health professional about their symptoms. CONCLUSION: Specialist psychosocial intervention may be indicated for only a subset of parents at the end of treatment. As per psychosocial standards of care, effective screening at this timepoint is warranted. Further examination of appropriate timing of psychosocial information and support services that are tailored to parents' circumstances is needed. eHealth approaches may be appropriate.

BACKGROUND: Significant challenges persist in treating children with rare, relapsed, or refractory malignancies. Novel molecularly targeted drugs promise improved outcomes for these children with reduced toxicity. However, there is often limited evidence to substantiate their clinical efficacy and guide their use. This raises issues for clinical decision-making, ethical concerns surrounding equity of access to these often-expensive agents, and the management of families' expectations for cure. This audit evaluated the off-label use of novel drugs and associated clinical outcomes in order to guide the development of future clinical and ethical guidelines. AIM: To evaluate the patterns in the off-label use of novel drugs for treating childhood cancer and the associated clinical outcomes to guide prospective studies and inform ethical and clinical governance protocols for the use of these agents. METHODS: A retrospective audit was performed for all patients who received novel drugs off-label as treatment for their malignancy at an Australian pediatric oncology center between 2010 and 2019. RESULTS: One hundred patients with 32 unique diagnoses received 133 novel drugs across 124 regimens. Eighty-four patients received these drugs at the second line of treatment or greater. Novel drug median cost was $15 521 AUD (Range: $6.53 AUD to $258 339 AUD) and was primarily funded by the hospital (N = 60/133, 45.1%) or compassionate access from pharmaceutical companies (N = 52/133, 39.1%). Decision-making related to novel drugs was inconsistently documented. Ninety-one of 124 treatment regimens commenced between 2010 and 2019 resulted in objective responses (73.4%), but only 35 were still ongoing upon review in June 2020 (38.5%). Median response duration was 12.6 months (Range: 0-93.2 months). CONCLUSIONS: While novel drugs were largely unable to definitively cure patients, most achieved objective responses. Prospective trials and more rigorous documentation are needed to fully i

BACKGROUND: Procedural anxiety in children undergoing radiation therapy (RT) is common and is associated with poor procedural compliance and an increased used of general anaesthesia (GA). There is emerging evidence that Virtual Reality (VR) technology may reduce medical procedural distress through realistic and educative exposure to actual procedures via virtual simulation. OBJECTIVE: To examine the feasibility, acceptability and efficacy of an Immersive VR exposure intervention aimed at reducing anxiety and enhancing preparedness for pediatric patients undergoing radiation therapy, and their parents. METHOD: A convenience sample of patients (6-18 years) scheduled for RT, and their parent caregivers, were recruited consecutively over a 14-month period. Patients were exposed to a virtual simulation of both CT Simulation (Phase 1) and RT (Phase 2), prior to these procedures occurring. Pre-and-post VR intervention measures (anxiety, health literacy) were administered across multiple time points. GA requirement following VR intervention was also recorded. RESULTS: Thirty children and adolescents were recruited (88% participation rate). High VR acceptability and satisfaction was reported by patients, parents and radiation therapists. There were minimal adverse effects associated with VR. The VR intervention was found to improve children's understanding of the RT procedures (health literacy) and lower pre-procedural child and parental anxiety. Only one child in the study required GA (3.33%). CONCLUSIONS: This study provides novel and preliminary support for utilizing VR to prepare children and families for RT. Subsequent implementation of VR into routine paediatric RT has the potential to improve clinical and operational outcomes.

BACKGROUND: The emerging role of genomically guided precision medicine in pediatric cancer care presents significant clinical, practical, and ethical challenges. We investigated the factors that influence decision-making in genomic medicine from the perspective of different stakeholders in the context of difficult-to-treat childhood cancer. METHODS: Health care providers (HCPs), parents of childhood cancer survivors, and general community members completed an online discrete choice experiment survey. Respondents considered whether to recommend (HCPs) or choose (parents/community) a genomically guided approach to pediatric cancer treatment. Respondents completed eight choice questions varying by survival benefit, prognosis, likelihood of finding a target, quality of life (QoL), HCP/parent preference, need for biopsy, cost, and who pays. Data were analyzed using a probability regression model, with findings expressed as relative importance, stated importance, and marginal willingness to pay (mWTP). RESULTS: One hundred twenty-six HCPs, 130 parents, and 531 community members participated. The probability of recommending/choosing genomically guided treatment increased significantly with better prognosis, survival benefit, improvements in QoL, and decision-making partner support. It decreased with increasing costs and if parents paid for treatment. HCPs were more responsive to all factors but were most influenced by survival outcomes, and parents and community members by QoL. In contrast to these forced choice preference results, HCPs stated they were most influenced by QoL and community members by survival. CONCLUSION: Our findings support the primacy of QoL in genomic decision-making, with some differences across stakeholders in the other factors influencing decision-making. These findings emphasize the need for high-quality information giving and communication to support genomic medicine choices.

BACKGROUND: The emerging role of genomically guided precision medicine in pediatric cancer care presents significant clinical, practical, and ethical challenges. We investigated the factors that influence decision-making in genomic medicine from the perspective of different stakeholders in the context of difficult-to-treat childhood cancer. METHODS: Health care providers (HCPs), parents of childhood cancer survivors, and general community members completed an online discrete choice experiment survey. Respondents considered whether to recommend (HCPs) or choose (parents/community) a genomically guided approach to pediatric cancer treatment. Respondents completed eight choice questions varying by survival benefit, prognosis, likelihood of finding a target, quality of life (QoL), HCP/parent preference, need for biopsy, cost, and who pays. Data were analyzed using a probability regression model, with findings expressed as relative importance, stated importance, and marginal willingness to pay (mWTP). RESULTS: One hundred twenty-six HCPs, 130 parents, and 531 community members participated. The probability of recommending/choosing genomically guided treatment increased significantly with better prognosis, survival benefit, improvements in QoL, and decision-making partner support. It decreased with increasing costs and if parents paid for treatment. HCPs were more responsive to all factors but were most influenced by survival outcomes, and parents and community members by QoL. In contrast to these forced choice preference results, HCPs stated they were most influenced by QoL and community members by survival. CONCLUSION: Our findings support the primacy of QoL in genomic decision-making, with some differences across stakeholders in the other factors influencing decision-making. These findings emphasize the need for high-quality information giving and communication to support genomic medicine choices.

BACKGROUND: The emerging role of genomically guided precision medicine in pediatric cancer care presents significant clinical, practical, and ethical challenges. We investigated the factors that influence decision-making in genomic medicine from the perspective of different stakeholders in the context of difficult-to-treat childhood cancer. METHODS: Health care providers (HCPs), parents of childhood cancer survivors, and general community members completed an online discrete choice experiment survey. Respondents considered whether to recommend (HCPs) or choose (parents/community) a genomically guided approach to pediatric cancer treatment. Respondents completed eight choice questions varying by survival benefit, prognosis, likelihood of finding a target, quality of life (QoL), HCP/parent preference, need for biopsy, cost, and who pays. Data were analyzed using a probability regression model, with findings expressed as relative importance, stated importance, and marginal willingness to pay (mWTP). RESULTS: One hundred twenty-six HCPs, 130 parents, and 531 community members participated. The probability of recommending/choosing genomically guided treatment increased significantly with better prognosis, survival benefit, improvements in QoL, and decision-making partner support. It decreased with increasing costs and if parents paid for treatment. HCPs were more responsive to all factors but were most influenced by survival outcomes, and parents and community members by QoL. In contrast to these forced choice preference results, HCPs stated they were most influenced by QoL and community members by survival. CONCLUSION: Our findings support the primacy of QoL in genomic decision-making, with some differences across stakeholders in the other factors influencing decision-making. These findings emphasize the need for high-quality information giving and communication to support genomic medicine choices.

BACKGROUND: The emerging role of genomically guided precision medicine in pediatric cancer care presents significant clinical, practical, and ethical challenges. We investigated the factors that influence decision-making in genomic medicine from the perspective of different stakeholders in the context of difficult-to-treat childhood cancer. METHODS: Health care providers (HCPs), parents of childhood cancer survivors, and general community members completed an online discrete choice experiment survey. Respondents considered whether to recommend (HCPs) or choose (parents/community) a genomically guided approach to pediatric cancer treatment. Respondents completed eight choice questions varying by survival benefit, prognosis, likelihood of finding a target, quality of life (QoL), HCP/parent preference, need for biopsy, cost, and who pays. Data were analyzed using a probability regression model, with findings expressed as relative importance, stated importance, and marginal willingness to pay (mWTP). RESULTS: One hundred twenty-six HCPs, 130 parents, and 531 community members participated. The probability of recommending/choosing genomically guided treatment increased significantly with better prognosis, survival benefit, improvements in QoL, and decision-making partner support. It decreased with increasing costs and if parents paid for treatment. HCPs were more responsive to all factors but were most influenced by survival outcomes, and parents and community members by QoL. In contrast to these forced choice preference results, HCPs stated they were most influenced by QoL and community members by survival. CONCLUSION: Our findings support the primacy of QoL in genomic decision-making, with some differences across stakeholders in the other factors influencing decision-making. These findings emphasize the need for high-quality information giving and communication to support genomic medicine choices.

IMPORTANCE: A substantial proportion of parents whose child is diagnosed with a life-threatening illness experience high levels of distress that can lead to long-term mental health difficulties. This can affect the child's recovery. OBJECTIVE: To evaluate the efficacy of an acceptance and commitment therapy-based group intervention, delivered using videoconferencing, in reducing posttraumatic stress symptoms (PTSS) in these parents. DESIGN, SETTING, AND PARTICIPANTS: This study was a randomized clinical trial of an intervention for parents with elevated acute stress symptoms. It was a single-site study conducted in a tertiary pediatric hospital in Australia. Parents of children aged 0 to 18 years admitted for a life-threatening illness or injury to the oncology, cardiology, or pediatric intensive care departments were eligible. Participants were screened for eligibility within the first month after diagnosis or admission and then were randomized to the intervention group or the waiting list control group 4 to 10 months after diagnosis or admission. Recruitment commenced January 2014, and final postintervention follow-up was completed in February 2018. Data analysis was performed from July to September 2018. INTERVENTIONS: Treatment was a psychological acceptance and commitment therapy-based group therapy program called Take a Breath, which consisted of a 6-session parent-mediated psychological intervention delivered via online videoconferences over the course of 8 weeks. Waiting list control participants received treatment as usual and were offered the intervention 3 months after randomization. MAIN OUTCOMES AND MEASURES: The primary outcome was PTSS, as measured by the Posttraumatic Stress Disorder Checklist-Version 5 (total score range, 0-80, with higher scores indicating greater symptom severity). The PTSS was measured both before and immediately after the intervention. Changes in psychological skills taught within the intervention were also evaluated, including

The products of an electrical discharge containing toluene are interrogated using resonance-enhanced multiphoton ionization and laser-induced fluorescence spectroscopies. A previously unreported electronic spectrum recorded at m/z = 105, with a putative origin band at 26053 cm-1, is assigned to methyltropyl radical, which appears to be a major product of the toluene discharge, plausibly arising from CH insertion. All three o-, m-, and p-xylyl isomers are also identified. These isomers are detected in electrical discharges containing various xylenes, where it is also found that interconversion occurs: A discharge of o-xylene produces some m-xylyl; a discharge of m-xylene produces some o-xylyl; and a discharge of p-xylene produces all three isomers. No α-methylbenzyl was detected, but styrene was. These observations are supported by state-of-the-art quantum chemical calculations, which reveal an isomerization pathway between methyltropyl and xylyl radicals for which there is no analogue in the canonical tropyl-benzyl isomerization.

This study investigated factors associated with acute stress symptoms in parents of seriously ill children across a range of illnesses and treatment settings within a pediatric hospital setting. It was hypothesized that psychosocial variables would be more strongly associated with acute stress responses than demographic and child illness variables. Participants were 115 mothers and 56 fathers of children treated within the oncology, cardiology, and intensive care departments of a pediatric hospital. Acute stress, psychosocial, demographic, and medical data were collected within the first 4 weeks of the child's hospital admission. A robust hierarchical regression model revealed that psychosocial factors significantly explained 36.8% of the variance in parent acute stress responses (p < .001); demographic variables significantly added a further 4.5% (p = .022), but illness-related factors did not contribute to the model. Findings support the implementation of a general psychosocial screening approach for parents across the wider hospital system, and that psychosocial risk factors may be targeted in interventions across different illnesses and treatment settings to improve parent outcomes.

Sleep disturbance is a recognized common side effect in children treated for acute lymphoblastic leukemia (ALL). Although associated with treatment factors such as hospitalization and corticosteroids, sleep problems may also be influenced by modifiable environmental factors such as parenting behaviors. The purpose of this study was to examine sleep problems in children undergoing treatment for ALL compared to healthy children and whether parenting practices are associated with sleep difficulties. Parents of 73 children aged 2-6 years who were (1) in the maintenance phase of ALL treatment (ALL group, n = 43) or (2) had no major medical illness (healthy control group, n = 30) participated in the study. Parents completed questionnaires measuring their child's sleep behavior and their own parenting practices. Parents of children undergoing ALL treatment reported significantly more child sleep problems; 48% of children with ALL compared to 23% of healthy children had clinical levels of sleep disturbance. Parents of the ALL group also reported significantly more lax parenting practices and strategies associated with their child's sleep including co-sleeping, comforting activities, and offering food and drink in the bedroom. Results of multivariate regression analysis indicated that, after controlling for illness status, parent-child co-sleeping was significantly associated with child sleep difficulties. Strategies employed by parents during ALL treatment may be a potential modifiable intervention target that could result in improved child sleep behaviors. Future research aimed at developing and testing parenting interventions aimed to improve child sleep in the context of oncology treatment is warranted.

BACKGROUND: A substantial proportion of parents whose child is diagnosed with a life-threatening illness, experience high levels of distress that can lead to long-term difficulties in mental health, family functioning and child adjustment. This study evaluates the efficacy of an Acceptance Commitment Therapy-based group intervention designed to reduce distress symptoms in these parents. The program is delivered using videoconferencing to overcome factors that prevent participation in traditional face-to-face therapy. METHOD/DESIGN: The study is a randomized control trial of the Take A Breath group intervention for parents demonstrating elevated symptoms of acute stress, delivered via videoconferencing in six 90 min group sessions. Participants are the primary caregivers of children aged 0 to 18 years admitted for a life threatening illness or injury to the Oncology, Cardiology, Neurology or Intensive Care Departments of a tertiary pediatric hospital. Parents will be randomized to intervention or waitlist control 4-10 months after their child's diagnosis. Measures will be collected prior to and immediately post intervention for intervention and waitlist parents to assess program efficacy. Intervention parents will be followed up at 6 months to assess the maintenance of program effects. We predict that intervention parents will show fewer symptoms post intervention than waitlist parents (primary outcomes: traumatic stress, depression, anxiety, stress symptoms), reflecting improvements in the psychological skills addressed in the intervention (mediating factors). It is anticipated that reductions in mental health difficulties for intervention parents will be maintained up to 6 months post-intervention and will be associated with broader improvements in parents' adjustment, child adjustment and child wellbeing (secondary outcomes). DISCUSSION: This study is unique in evaluating a group intervention delivered to parents of children affected by of a diverse range life-thr

BACKGROUND: Diagnosis of life threatening childhood illness or injury can lead to significant distress reactions in parents, with many experiencing clinically significant levels of post-traumatic stress symptoms. These symptoms can have long-term adverse impacts on parent mental health, family functioning, and the adjustment of the ill child. Independent studies have found such reactions in several different illness groups. However, very little research has systematically compared the prevalence, impact and trajectories over time of post-traumatic stress symptoms in parents across different childhood illness groups with an acute life threat. The current study seeks to map the course of post-traumatic stress reactions in parents of children with various life threatening illnesses over an 18 month period, and identify factors that predict successful adaptation in families. METHOD/DESIGN: The current study described is of a prospective, longitudinal design. The sample included parents of children admitted to four major hospital departments at the Royal Children's Hospital, Melbourne, Australia, for a life threatening illness or injury. Eligible parents were those who were caregivers of children aged 0-to 18-years admitted to the Oncology, Cardiology, Neurology and Pediatric Intensive Care Unit. Parents were recruited acutely, and completed self-report questionnaires at four time-points: within the first 4 weeks (T1:); then at 4 months (T2); 7 months (T3); and 19 months (T4) after admission. Questionnaires assessed parent and child mental health and wellbeing, and a number of risk and reliance factors such child illness factors, parent demographic factors, and psychosocial factors. DISCUSSION: This study is one of the first to document the trajectory of post-traumatic stress responses in parents of very ill children, across illness groups. Given that it will also identify risk and resilience factors, and map the course of parent outcomes over an 18 monthperiod, it has t