The Australian New Zealand Consortium in Children, Adolescents, and Young Adults Oncofertility action plan.

International and national oncofertility networks, including the US-led Oncofertility Consortium, FertiProtekt, and the Danish Network, have played pivotal roles in advancing the discipline of oncofertility over the last decade. Many other countries lack a shared approach to pediatric oncofertility health service delivery. This study aims to describe baseline oncofertility practices at Australian New Zealand Children's Haematology/Oncology Group centers in 2019-2021, describe binational priorities for care, and propose a 5-year action plan for best practice to be implemented by the newly formed Australian New Zealand Consortium in Children, Adolescents, and Young Adults (CAYA) Oncofertility (ANZCO).

"Their Bodies Just Give It Away": A Qualitative Study of Pain Assessment in the Context of Pediatric Hematopoietic Stem Cell Transplantation Therapy.

BACKGROUND: Children undergoing hematopoietic stem cell transplantation (HSCT) are vulnerable to pain. OBJECTIVE: This study aimed to examine how healthcare providers and parents assessed pain and what contextual factors influenced their pain assessment practices for children hospitalized after allogeneic HSCT therapy. METHODS: A qualitative case study was conducted in a tertiary level pediatric HSCT unit in 2 phases. Semistructured interviews with parents were conducted at 30 and 90 days after HSCT therapy. Healthcare providers participated in naturalistic observations of pain-related care provided to children during their hospitalization for HSCT therapy and a semistructured interview. RESULTS: The assessment of pain after transplantation by healthcare providers and parents was predominantly reliant on the observation of children for behaviors indicative of pain, rather than the application of validated pain assessment tools. Without formal measures of the pain experience, judgments regarding the severity of children's pain were influenced by the context of high acuity of care posttransplantation and the emotional responses of healthcare providers and parents from bearing witness to children's pain. CONCLUSION: Pain assessments mostly reflected children's ability to tolerate pain, rather than a genuine measurement of how significantly pain impacted the child. IMPLICATION FOR PRACTICE: This study has emphasized how the assessment of pain for children hospitalized during HSCT therapy is limited by the complexity of the clinical environment. It is recommended that validated methods of assessing pain by healthcare providers and parents be implemented into clinical practice to ensure children's pain is visible.

Experiences of Family and Partner Support in Fertility Decision-Making Among Adolescents and Young Adults with Cancer: A National Australian Study.

Purpose: To understand how adolescents and young adults (AYAs) with cancer experience family and partner involvement in fertility preservation (FP) decision-making. Methods: As part of a nationally representative Australian cross-sectional study of 15-25-year olds with cancer, 196 participants (mean age 19.9 [standard deviation 3.2] years at diagnosis; 51% male) were surveyed regarding FP decision-making. Results: One hundred sixty-one (83%) participants reported discussion of potential effects of cancer and its treatment on fertility, of whom 57 (35%) did not undertake FP (51% of females; 19% of males). Parental involvement (mothers 62%, fathers 45%) in decision-making was considered helpful, including for 73% of 20-25-year olds with partners. Sisters and brothers were involved less often, yet rated helpful in 48% and 41% of cases, respectively. Older participants were more likely than younger ones to have involved partners (47% vs. 22%, p = 0.001) and less likely to have involved mothers (56% vs. 71%, p = 0.04) or fathers (39% vs. 55%, p = 0.04). Conclusion: This is the first quantitative study to explore family and partner involvement in AYA FP decision-making in both females and males in a nationally representative sample. Parents are important resources who commonly assist AYAs with these complex decisions. Although many AYAs will be the main decision-makers when it comes to FP, particularly as AYAs mature, these data suggest that resources and support should be available for and inclusive of parents, partners, and siblings.

Experiences of Oncofertility Decision-Making and Care in a National Sample of Adolescent and Young Adult Cancer Patients and Parents.

Purpose: Cancer and its treatments are known to compromise fertility in adolescents and young adults (AYAs). The emotional burden of possible infertility is reduced in those who receive supportive oncofertility care. In legal minors, provision of health care must consider the legal context and desire that AYAs have for autonomous decision-making, together with their competence to make health decisions. This has important implications for how oncofertility discussions may, or may not, involve parents. The aim of this study was to explore oncofertility decision-making and care experiences in a national Australian sample of AYA cancer patients and their parents. Methods: AYAs aged 15-25 years and parents were recruited from 17 cancer care sites and CanTeen Australia as part of a national AYA cancer care study. The cross-sectional survey included open-ended questions regarding oncofertility care experiences. We used reflexive thematic analysis to identify themes. Results: Data were available for 99 AYAs and 111 parents. Four themes were identified: emotional care needs; parent-AYA dynamics including AYA autonomy and agency; decision-making considerations including values and practicalities; and reflections on oncofertility care and follow-up. Both AYAs and parents placed importance on AYA autonomy in fertility decision-making, but many AYAs appreciated the role of parents in providing support and guidance throughout the process. Conclusion: Health care professionals are encouraged to autonomously engage AYAs around fertility decision-making, while concurrently offering opportunities that promote parental support. Better psychological support and follow-up oncofertility care are also needed.

The management of pain during pediatric hematopoietic stem cell transplantation: A qualitative study of contextual factors that influenced pain management practices.

BACKGROUND: Children hospitalized following hematopoietic stem cell transplantation (HSCT) experience complex and prolonged pain in response to the intensity of this treatment. OBJECTIVES: To describe how pain was managed for children during HSCT therapy and how contextual factors related to the clinical environment influenced healthcare providers' and parents' pain management practices. METHODS: A qualitative case study was conducted and involved semi-structured interviews at two time points following transplantation (30 and 90 days) with parents (n = 10) and naturalistic observations of pain-related care provided to children (n = 29) during HSCT therapy by their healthcare providers (n = 10). Semi-structured interviews were also conducted with healthcare providers (n = 14). RESULTS: The effectiveness of pain management interventions was hindered by the multifactorial nature of pain children experienced, a gap in the provision of psychosocial interventions for pain and a lack of evidence-based guidelines for the sustained, and often long-term, administration of opioids and adjuvant medications. Misconceptions were demonstrated by healthcare providers about escalating pain management according to pain severity and differentiating between opioid tolerance and addiction. Parents were active in the management of pain for children, especially the provision of nonpharmacological interventions. Collaboration with external pain services and the impact of caring for children in protective isolation delayed timely management of pain. CONCLUSIONS: There is a pressing need to create evidence-based supportive care guidelines for managing pain post transplantation to optimize children's relief from pain. If parents and children are to be involved in managing pain, greater efforts must be directed toward building their capacity to make informed decisions.

Ethical challenges faced by healthcare workers in pediatric oncology care during the COVID-19 pandemic in Australia.

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.

Telling the truth to seriously ill children: Considering children's interests when parents veto telling the truth.

How should clinicians respond when parents will not allow their child to know the truth about their medical condition and treatment? There is wide consensus amongst clinicians and ethicists that children should be given "honest" information delivered in a developmentally appropriate manner. However, the basis in ethical theory is not clear, especially for pre-adolescents. These children are old enough to understand some information, but are not yet "mature minors" capable of making their own health care decisions. We take the position that thinking in terms of a child's "right to know" is not the most helpful in dealing with the ethical complexity of these situations. We propose that questions of truth-telling are best addressed in terms of how a child's interests are promoted or set back by being told the truth. Our first step is to give an account of the concept of children's interests in general. Then we relate that account specifically to truth-telling. In doing so, we use a relatively straightforward hypothetical but realistic case, in order to illustrate how ethical deliberation using interests would proceed. The case is not intended to be particularly contentious or difficult, so that the focus is on the nature of the ethical reasoning, rather than any complexities of the case.

Behavioral and Emotional Functioning of Children and Adolescents at the End of Treatment for Acute Lymphoblastic Leukemia Compared to Healthy Peers.

This study describes the behavioral and emotional adjustment of 77 children and adolescents 3 months post-treatment for acute lymphoblastic leukemia (ALL), compared to 52 age and sex-matched healthy peers. Parents, teachers, and self-report ratings on the Behavioral Assessment System for Children, Second Edition (BASC-2) were utilized to measure psychological function. While overall mean scores were in the average range for both groups, parents and teachers rated patients higher on behavior symptoms, internalizing problems and adaptive skill difficulties. No significant differences between groups were observed on self-report, and inter-rater correlations were low to moderate. For the ALL group, maternal university completion was associated with elevations on parent report of behavioral problems, while no other factors predicted either parent or teacher report on other scales. Findings indicate that a subset of patients will require specialist psychosocial support to optimise their adjustment following treatment completion.

The influence of contextual factors on children's communication of pain during pediatric Haematopoietic Stem Cell Transplantation: A qualitative case study.

PURPOSE: The aim of this study was to describe how contextual factors related to the clinical setting of a pediatric HSCT unit influenced children's communication of pain to their health-care providers and parents during hospitalization. DESIGN AND METHODS: A qualitative case study design was conducted in two-phases in a tertiary level pediatric HSCT unit. The Social Communication Model of Pain provided the conceptual framework for the study. In phase one participants were parents and phase two participants were health-care providers and children in a pediatric HSCT unit. Parents participated in semi-structured interviews at 30- and 90-days post-transplantation regarding their child's communication of pain. Naturalistic observations of children receiving clinical care were conducted and health-care providers participated in semi-structured interviews. RESULTS: Children extensively denied pain to their parents and health-care providers. When children did communicate pain, they were motivated by a need to seek interventions for their pain. Children's willingness to communicate pain was influenced by the physiological impact of HSCT therapy, their previous experiences of pain, their relationship with parents and health-care providers and parents and an environment of fear and uncertainty. CONCLUSIONS: There is a pressing need for child-centric approaches to support children to communicate their pain experiences to overcome the limitations imposed by the complexity of their medical treatment and the clinical environment in which they receive healthcare. PRACTICE IMPLICATIONS: In the context of HSCT therapy children may not communicate pain until pain is severe, and no longer bearable, or outright deny the presence of pain.

eHealth tools for childhood cancer survivorship care: A qualitative analysis of survivors', parents', and general practitioners' views.

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.

Parent perceptions of pediatric oncology care during the COVID-19 pandemic: An Australian study.

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.

Providing Psychological Support to Parents of Childhood Cancer Survivors: 'Cascade' Intervention Trial Results and Lessons for the Future.

We conducted a three-armed trial to assess Cascade, a four-module group videoconferencing cognitive behavior therapy (CBT) intervention for parents of childhood cancer survivors currently aged <18 years. We allocated parents to Cascade, an attention control (peer-support group), or a waitlist. The primary outcome was parents' health-related quality of life (PedsQL-Family Impact/EQ-5D-5L) six months post-intervention. Parents also reported their anxiety/depression, parenting self-agency, fear of recurrence, health service and psychotropic medication use, engagement in productive activities, confidence to use, and actual use of, CBT skills, and their child's quality of life. Seventy-six parents opted in; 56 commenced the trial. Cascade achieved good parent engagement and most Cascade parents were satisfied and reported benefits. Some parents expressed concerns about the time burden and the group format. Most outcomes did not differ across trial arms. Cascade parents felt more confident to use more CBT skills than peer-support and waitlisted parents, but this did not lead to more use of CBT. Cascade parents reported lower psychosocial health scores for their child than waitlisted parents. Cascade parents' health service use, psychotropic medication use, and days engaged in productive activities did not improve, despite some improvements in waitlisted parents. Our trial was difficult to implement, but participants were largely satisfied. Cascade did not improve most outcomes, possibly because many parents were functioning well pre-enrolment. We used these findings to improve Cascade and will trial the new version in future.

Long-term health-related quality of life in young childhood cancer survivors and their parents.

PURPOSE: Few studies have investigated the health-related quality of life (HRQoL) of young childhood cancer survivors and their parents. This study describes parent and child cancer survivor HRQoL compared to population norms and identifies factors influencing child and parent HRQoL. METHODS: We recruited parents of survivors who were currently <16 years, and >5 years postdiagnosis. Parents reported on their child's HRQoL (Kidscreen-10), and their own HRQoL (EQ-5D-5L). Parents rated their resilience and fear of cancer recurrence and listed their child's cancer-related late effects. RESULTS: One hundred eighty-two parents of survivors (mean age = 12.4 years old and 9.7 years postdiagnosis) participated. Parent-reported child HRQoL was significantly lower than population norms (48.4 vs. 50.7, p < .009). Parents most commonly reported that their child experienced sadness and loneliness (18.1%). Experiencing more late effects and receiving treatments other than surgery were associated with worse child HRQoL. Parents' average HRQoL was high (0.90) and no different to population norms. However 38.5% of parents reported HRQoL that was clinically meaningfully different from perfect health, and parents experienced more problems with anxiety/depression (43.4%) than population norms (24.7%, p < .0001). Worse child HRQoL, lower parent resilience, and higher fear of recurrence was associated with worse parent HRQoL. CONCLUSIONS: Parents report that young survivors experience small but significant ongoing reductions in HRQoL. While overall mean levels of HRQoL were no different to population norms, a subset of parents reported HRQoL that was clinically meaningfully different from perfect health. Managing young survivors' late effects and improving parents' resilience through survivorship may improve HRQoL in long-term survivorship.

Experiences of Pain in Hospitalized Children During Hematopoietic Stem Cell Transplantation Therapy.

Children undergoing hematopoietic stem cell transplantation (HSCT) are vulnerable to pain due to the intensity and toxicity of this treatment. An instrumental case study design of two qualitative phases was conducted to examine the pain experiences of hospitalized children during HSCT therapy and how contextual factors related to the pediatric HSCT environment influenced their experience of pain. The Social Communication Model of Pain provided the conceptual framework for the study. In Phase 1, semi-structured interviews were conducted with parents of a child undergoing HSCT therapy at two time points. Phase 2 was conducted as a naturalistic observational study of the clinical care provided to children and semi-structured interviews with health-care providers. Children experienced complex and multifaceted pain with physical, psychological, and contextual contributors. Understanding the many factors contributing to the child's pain experience can inform strategies to improve the management of pain during HSCT therapy.

Parental adjustment following their child's completion of acute lymphoblastic leukemia treatment.

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.

Effects of immersive virtual reality exposure in preparing pediatric oncology patients for radiation therapy.

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.

Understanding decisions to participate in genomic medicine in children's cancer care: A comparison of what influences parents, health care providers, and the general community.

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.

An institutional audit of the use of novel drugs in pediatric oncology.

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 inform the future use of these agents given the heterogeneity of their applications.

Ensuring best practice in genomics education and evaluation: reporting item standards for education and its evaluation in genomics (RISE2 Genomics).

PURPOSE: Widespread, quality genomics education for health professionals is required to create a competent genomic workforce. A lack of standards for reporting genomics education and evaluation limits the evidence base for replication and comparison. We therefore undertook a consensus process to develop a recommended minimum set of information to support consistent reporting of design, development, delivery, and evaluation of genomics education interventions. METHODS: Draft standards were derived from literature (25 items from 21 publications). Thirty-six international experts were purposively recruited for three rounds of a modified Delphi process to reach consensus on relevance, clarity, comprehensiveness, utility, and design. RESULTS: The final standards include 18 items relating to development and delivery of genomics education interventions, 12 relating to evaluation, and 1 on stakeholder engagement. CONCLUSION: These Reporting Item Standards for Education and its Evaluation in Genomics (RISE2 Genomics) are intended to be widely applicable across settings and health professions. Their use by those involved in reporting genomics education interventions and evaluation, as well as adoption by journals and policy makers as the expected standard, will support greater transparency, consistency, and comprehensiveness of reporting. Consequently, the genomics education evidence base will be more robust, enabling high-quality education and evaluation across diverse settings.

Clinical Utility of Precision Medicine in Pediatric Oncology: A Systematic Review.

PURPOSE: Precision medicine uses advanced molecular techniques to guide the use of targeted therapeutic drugs and is an emerging paradigm in pediatric oncology. Clinical evidence related to the efficacy of many novel targeted drugs, however, is currently very limited given the rarity of pediatric cancer and the lack of published evidence for the use of these drugs in children. This systematic review aimed to evaluate the existing evidence for the feasibility and clinical efficacy of precision medicine in pediatric oncology. METHODS: A systematic review was conducted using the PubMed, Medline, and Embase databases. Clinical trials and observational studies, which used molecular assays such as whole-exome sequencing to identify molecular targets that guided the allocation of targeted cancer drugs and reported clinical outcomes, were included in this review. RESULTS: Twenty-one clinical trials and observational studies were identified, collectively enrolling 1,408 pediatric patients across nine countries. Therapeutic targets were found in 647 patients (46.0%); however, only 175 of these patients (27.0%) received a targeted drug. Objective responses were recorded for 73 (41.7%) of these 175 patients, only 5.2% of the total sample. Inconsistent outcome reporting and limited comparison with conventional treatment hindered evaluation of the clinical utility of precision medicine. CONCLUSION: Precision medicine can feasibly identify molecular targets in a clinical setting. However, the inaccessibility of targeted drugs is a significant barrier, restricting the exploration of its therapeutic potential in pediatric oncology. Future clinical trials should endeavor to link the molecular testing results with access to targeted drugs and standardize outcome reporting to advance understanding of the benefits of this novel paradigm in improving patient outcomes.