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Objective: This qualitative study examined ethical challenges reported by healthcare professionals (HCPs) working in a large Australian pediatric oncology center during a period of strict COVID-19 restrictions., Methods: We conducted semi-structured interviews with 21 HCPs who provided pediatric cancer care during the pandemic in 2020, during strict lockdown periods. Interviews examined the difficulties they faced, as well as their own ethical evaluation of the impact of COVID-19 policies on oncology care. Data were analyzed using inductive content analysis and thematic analysis., Results: HCPs faced several challenges, primarily originating from hospital restrictions, which led to changes in usual clinical practices. These challenges included delivering care with personal protective equipment (PPE), the impact of a one-parent visitation policy, changes in psychosocial and allied health services, and COVID-19 swabbing policies. Overall, there was consensus from participants that hospital restrictions were justified and, while difficult, HCPs simply had to provide the best care possible given the circumstances. However, participants described decreased capacity to deliver holistic patient care and, in some instances, a tendency to avoid ethical reflection. Lastly, there was a consistent theme of shame and sense of responsibility underlying some participants' anxiety around inadvertently transmitting COVID-19 to immunocompromised patients., Conclusion: Our findings show that many staff felt unease at the disruptions in patient care due to COVID-19 restrictions. Some HCPs indicated a degree of moral distress, with a possibility of moral injury among some HCPs. A focus on ethical recovery could assist in preventing any ongoing difficulties among HCPs because of their experiences., (© 2022 The Authors. Pediatric Blood & Cancer published by Wiley Periodicals LLC.)

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., (© 2021 Wiley Periodicals LLC.)

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., (© 2021 Wiley Periodicals LLC.)

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., (© 2021 Wiley Periodicals LLC.)

Background: Behavioral and emotional difficulties are a recognised side effect of childhood acute lymphoblastic leukemia (ALL) treatment. Modifiable factors, such as parenting strategies, may be an appropriate target for interventions to assist families with managing their child's behavior, potentially leading to improved psychosocial and clinical outcomes. This study examined whether parenting strategies are associated with child behavioral and emotional problems in a pediatric oncology context, with the aim of establishing whether parenting is a potential modifiable target for psychosocial intervention., Procedure: Participants included 73 parents of children aged 2-6 years who were either (i) in the maintenance phase of treatment for ALL at the Royal Children's Hospital Children's Cancer Centre, Melbourne (N = 43), or (ii) had no major medical history (healthy control group) (N = 30). Participants completed psychometrically validated questionnaires that assessed parenting strategies and child emotional and behavioral problems., Results: Results revealed that the ALL group parents reported higher lax parenting and more spoiling and bribing of their child than the healthy control group. Results from regression models indicated that, after controlling for the significant contribution of illness status and child age on child emotional and behavioral difficulties, parental laxness and parental overprotection were significantly associated with child emotional and behavioral difficulties., Conclusions: Supporting parents to minimise sub-optimal parenting strategies, particularly lax parenting, may offer a fruitful avenue for future research directed toward modifiable factors associated with managing child emotional and behavioral problems in a pediatric oncology context., (© 2014 Wiley Periodicals, Inc.)

Background: Neurobehavioral deficits will affect up to 50% of pediatric cancer survivors treated with central nervous system (CNS)-directed therapies. Guidelines suggest assessment of neurobehavioral skills at diagnosis be extended from patients with brain tumors to include all patients requiring CNS-directed therapies. However, comprehensive neuropsychological assessment at diagnosis is difficult to implement and resource intensive. A screening assessment targeted at the neurobehavioral domains known to be impacted by cancer treatments may be more feasible. This study aimed to assess the feasibility of implementing baseline neurobehavioral screening following childhood cancer diagnosis., Procedure: A consecutive sample of 59 recently diagnosed patients requiring CNS-directed therapies, and 49 healthy controls were assessed using a targeted neurobehavioral screen, which included measures of developmental, cognitive, academic, behavioral, and psychosocial functioning. Feasibility was assessed using a formal feasibility framework, with criteria of brevity, simplicity, relevance, acceptability, and value. Neurobehavioral assessment was compared to standard care to determine the quality of information acquired from the screen., Results: Mean time from diagnosis to assessment was 5.17 weeks. Assessments were completed within 1 hour for 87% of patients. Participant and researcher evaluation indicated the screen was acceptable across a range of criteria, with no differences between clinical and control groups. Compared to standard medical record documentation, the screen provided significant additional information on developmental and neurobehavioral status of patients at diagnosis., Conclusion: A brief neurobehavioral screen in the early period following cancer diagnosis is feasible and provides valuable baseline data for children at risk of neurobehavioral late-effects of cancer treatments., (Copyright © 2012 Wiley Periodicals, Inc.)

Background: The Psychosocial Assessment Tool 2.0 (PAT2.0) is a recently developed screening measure for assessing psychosocial risk in families caring for a child with cancer. This study aimed to assess the external validity of the PAT2.0 in an Australian pediatric oncology sample. Further aims included examining mothers' and fathers' PAT2.0 scores, change in psychosocial risk over time, and the relationship between treatment intensity and psychosocial risk., Procedure: Parents of 143 children newly diagnosed with cancer completed the PAT2.0 at diagnosis (T1) and 6-8 months later (T2). A treatment intensity measure (ITR-2) was completed by two clinical oncologists., Results: The PAT2.0 stratified families into a 3-tiered risk framework and was consistent with existing data from the authors of the scale. The majority of families were stratified into the Universal (lowest risk) category; more than one-third of families had some elevated psychosocial risk. PAT2.0 scores of mothers and fathers were correlated and psychosocial risk remained relatively stable between T1 and T2. Treatment intensity scores were not related to PAT2.0 scores at T2., Conclusions: Findings support the external validity of the PAT2.0 as a psychosocial screener. Mothers' and fathers' ratings of risk are similar; however, multi-informant use of the PAT2.0 may be clinically useful. Psychosocial risk, as measured by the PAT2.0, is a relatively stable construct over the first months of treatment and is independent of treatment intensity., (Copyright 2009 Wiley-Liss, Inc.)

Background: We previously showed in a prospective study that rituximab appears to be effective in some children and adolescents with severe chronic immune thrombocytopenia. Eleven of 36 patients achieved and maintained platelet counts over 50,000/mm(3) within the first 12 weeks. These patients were followed for the next year., Methods: Platelet counts were monitored monthly and all subsequent bleeding manifestations and need for further treatment was noted., Results: Eight of the 11 initial responders maintained a platelet count over 150,000/mm(3) without further treatment intervention. Three patients had a late relapse. One initial non-responder achieved a remission after 16 weeks, and two additional patients maintained platelet counts around 50,000/mm(3) without the need for further intervention., Conclusions: Rituximab resulted in sustained efficacy with platelet counts of 50,000/mm(3) or higher in 11 of 36 patients (31%)., ((c) 2008 Wiley-Liss, Inc.)