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).

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.

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.

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.

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.

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.

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.

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.

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.

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.

Quality of life in parents of seriously Ill/injured children: a prospective longitudinal study.

PURPOSE: Parents of children with serious childhood illness or injury (SCII) are at risk of experiencing poor quality of life (QoL). This study investigated the nature of parent QoL at the time of child diagnosis and seven months post-diagnosis, the change in parent QoL over time, and early factors influencing short-term and longer-term parent QoL. METHODS: The sample was drawn from a prospective longitudinal cohort study conducted within a paediatric hospital setting. Participants comprised 223 parents of 167 children diagnosed with a life-threatening illness and hospitalised in the cardiology, oncology, or intensive care departments. Examined data included QoL ratings completed by parents within four weeks of diagnosis and seven months post-diagnosis, and demographic, illness-related, and psychosocial predictor measures collected within four weeks of diagnosis, or four months post-diagnosis. RESULTS: Generalised Estimating Equations were utilised to analyse data. Results indicated poor parent QoL at diagnosis, and normalised parent QoL at seven months. Improvement occurred most noticeably in the psychosocial domain. Reduced acute stress symptomatology and increased psychological flexibility were associated with higher parent QoL at diagnosis. Increased perceived emotional resources predicted enhanced parent QoL at seven months. CONCLUSION: Paediatric medical care teams should consider the challenges to QoL experienced by parents of children with SCII. Parents reporting acute stress symptoms during the acute-illness phase should be prioritised for intervention. Further, parent-dyads presenting at post-acute care settings reporting poor emotional resources would benefit from psychosocial and educative support.

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.

Exploring health state utility values of parents of children with a serious illness.

PURPOSE: In cost-utility analysis, outcomes are usually measured in terms of quality-adjusted life years, where length of life is adjusted by levels of health-related quality of life (HRQoL) using a single value, known as a health state utility value (HSUV). This study explores the HSUVs of parents of children with a serious illness admitted within three hospital departments (cardiology, oncology and paediatric intensive care) across four time points, compares HSUVs with Australian population norms and examines predictors of parental HSUVs. METHODS: Data were obtained from the Take a Breath study, where parental HSUVs were measured using the Assessment of Quality of Life-8 Dimensions (AQoL-8D). Descriptive statistics and t-tests compared the AQoL-8D scores with population norms, while repeated measures ANOVA was used to compare parental HSUVs of children treated across illness groups over time. Regression analysis was performed to determine predictors of parental HSUVs. RESULTS: Parental HSUVs were not significantly different from the general Australian population norms (p = 0.939), as measured by the AQoL-8D. However, statistically significant differences were observed in the psychosocial super-dimension (p < 0.01) and in all eight AQoL-8D dimensions, except for senses and self-worth. No significant differences were observed across illness groups. Parental HSUVs were associated with psychosocial risk factors of trait anxiety (p < 0.001), depression (p < 0.001) and family beliefs (p = 0.024). CONCLUSION: Having a child with a severe illness has an impact on the psychosocial aspects of parental HRQoL regardless of the type of illness. Psychosocial health factors of trait anxiety, depression and family beliefs were important predictors of parental HSUV.

Health-related quality of life in paediatric patients up to five years post-treatment completion for acute lymphoblastic leukaemia: a systematic review.

PURPOSE: Despite survival rates greater than 90%, treatment for paediatric acute lymphoblastic leukaemia (ALL) remains challenging for families. The early post-treatment phase is an especially unique time of adjustment. The primary aim of this review was to identify and synthesise research on health-related quality of life (HRQoL) for patients up to five years post-treatment. The secondary aim was to identify if theorised risk/resistance model factors could explain any variance in reported HRQoL. METHODS: We conducted a systematic review using the PRISMA guidelines across five databases: Embase, Medline, Psychinfo, Pubmed, and Cochrane. Only studies examining HRQoL up to five years post-treatment were included. Studies were excluded if they covered periods greater than five years post-treatment or did not differentiate between patients with ALL and other cancers. After assessing the quality of each study sample size, patient characteristics, HRQoL outcomes and HRQoL correlates were extracted and summarised. RESULTS: A total of 14 studies representing 1254 paediatric patients, aged 2-18 years, were found. HRQoL findings were mixed, dependent on time since completion and comparison group. Patient HRQoL was mostly lower compared to normative data, whilst higher compared to healthy control groups, patients on treatment, and patients with other types of cancers. Lower HRQoL was also found to be associated with demographic (age and sex), family dysfunction, and treatment-related factors. CONCLUSIONS: Completing treatment signalled a significant improvement in HRQoL for patients compared to being on treatment. Overall, however, HRQoL was still significantly lower than the population during the early post-treatment period.

Psychological trajectories of mothers and fathers following their child's diagnosis of a life-threatening illness or injury: A longitudinal investigation.

OBJECTIVE: Explore the mental health trajectories of parents following their child's life-threatening illness/injury. METHODS: Participants were 217 parents (mean age: 34.9-40.0; 66 fathers) of 165 children who presented to a tertiary hospital with a life-threatening illness/injury. Parents completed questionnaires about their mental health and psychosocial stressors within 4 weeks of the child's illness/injury (T1), and 4 months (T2), 7 months (T3), and 19 months (T4) postdiagnosis. RESULTS: For both mothers and fathers, mental health symptoms were elevated at diagnosis declining to normal levels by T3, with a pattern of increase at T4. Fathers demonstrated a faster decline in symptoms between T1 and T2, and fathers, but not mothers, experienced a relapse in depressive symptoms at T4. Fathers reported higher rates of work changes. CONCLUSIONS: These findings have important implications for the design and timing of parental interventions to support families of children with life-threatening disease/injury.

Fertility Preservation Toolkit: A Clinician Resource to Assist Clinical Discussion and Decision Making in Pediatric and Adolescent Oncology.

PURPOSE: Fertility preservation (FP) discussions in children with cancer presents unique challenges due to ethical considerations, lack of models-of-care, and the triadic nature of discussions. This study evaluated a fertility toolkit for clinicians involved in FP discussions with pediatric, adolescent, and young adult patients and parents. MATERIALS AND METHODS: A survey-based, longitudinal study of clinicians at The Royal Children's Hospital Melbourne involved in FP discussions undertaken at 3 time-points: 2014, alongside an education session for baseline assessment of oncofertility practices (survey 1); after each toolkit use to evaluate case-specific implementation (survey 2); 2016, to evaluate impact on clinical practice (survey 3). RESULTS: Fifty-nine clinicians completed survey 1. Over 66% reported baseline dissatisfaction with the existing FP system; 56.7% were not confident in providing up-to-date information. Only 34.5% "often" or "always" provided verbal information; 14.0% "often" or "always" provided written information. Survey 2 was completed after 11 consultations. All clinicians were satisfied with the discussions and outcomes using the toolkit. Thirty-nine clinicians completed survey 3. Over 70% felt confident providing up-to-date FP knowledge, 67.7% "often" or "always" provided verbal information, and 35.4% "often" or "always" provided written information. CONCLUSIONS: Clinicians desire improvement in FP practice. The toolkit provided significant perceived and actual benefits.

Information needs of adolescent and young adult cancer patients and their parent-carers.

PURPOSE: This study aimed to explore health-related information needs of adolescent and young adults (AYAs) and their parent-carers and to examine demographic and clinical variables associated with unmet information needs, including patient activation. METHODS: In a national cross-sectional study, 196 Australian AYAs diagnosed with cancer between 15 and 25 years and within 24 months of diagnosis and 204 parent-carers reported on total and unmet needs for cancer and health-related information. Fifty-one percent of AYAs were male, 81% had completed treatment and 86% were treated in adult hospitals. RESULTS: AYAs and parents reported high levels of total need for information. The mean number of unmet needs was 5.63 and 6.82 for AYAs and parents, respectively. AYAs reported the highest unmet needs in relation to their cancer (e.g. late effects and cancer recurrence, and having children in the future). The highest unmet parent information needs were related to medical information about their child as well as information on financial issues for their children and themselves. Unmet information need was associated with psychological distress (posttraumatic stress symptoms) for AYAs and parents. Patient activation was negatively associated with unmet information needs for AYAs. Demographic and treatment variables were not significantly associated with information needs. CONCLUSION: These findings indicate the importance of information needs for AYAs and their carers. The association between patient activation and information needs suggests that promoting young people's engagement with healthcare is a key opportunity within AYA care. Parent information needs and associated emotional distress additionally highlight the importance of family-centered care.

Featured Article: Trajectories of Posttraumatic Stress Symptoms in Parents of Children With a Serious Childhood Illness or Injury.

Objective: Serious childhood illness is associated with significant parent psychological distress. This study aimed to (a) document acute and posttraumatic stress symptoms (PTSS) in parents of children with various life-threatening illnesses; (b) identify trajectory patterns of parental PTSS and recovery over 18 months; (c) determine psychosocial, demographic, and illness factors associated with trajectory group membership. Methods: In total, 159 parents (115 mothers, 44 fathers) from 122 families participated in a prospective, longitudinal study that assessed parent psychological responses across four time points-at diagnosis, and 3, 6, and 18 months later. Children were admitted to the Cardiology, Oncology, and Pediatric Intensive Care Departments in a tertiary pediatric hospital. The primary outcome was parent PTSS. Results: Three distinct parent recovery profiles were identified-"Resilient," "Recovery," and "Chronic." The "Resilient" class (33%) showed low distress responses across the trajectory period, whereas the "Recovery" class (52%) showed significantly higher levels of distress at the time of diagnosis that gradually declined over the first months following their child's illness. Both of these classes nevertheless remained within the normative range throughout. In contrast, the "Chronic" class (13%) was consistently high in severity, remaining within the clinical range across the entire period. Psychosocial factors such as mood, anxiety, and emotional responses predicted group membership, whereas demographic and illness factors did not. Conclusions: Parents show considerable resilience in the face of children's life-threatening illnesses. Early assessment of parent psychosocial factors may aid identification of those who would benefit from early intervention.

Measuring cancer-specific child adjustment difficulties: Development and validation of the Children's Oncology Child Adjustment Scale (ChOCs).

BACKGROUND: Childhood cancer is associated with child adjustment difficulties including, eating and sleep disturbance, and emotional and other behavioral difficulties. However, there is a lack of validated instruments to measure the specific child adjustment issues associated with pediatric cancer treatments. The aim of this study was to develop and evaluate the reliability and validity of a parent-reported, child adjustment scale. PROCEDURE: One hundred thirty-two parents from two pediatric oncology centers who had children (aged 2-10 years) diagnosed with cancer completed the newly developed measure and additional measures of child behavior, sleep, diet, and quality of life. Children were more than 4 weeks postdiagnosis and less than 12 months postactive treatment. Factor structure, internal consistency, and construct (convergent) validity analyses were conducted. RESULTS: Principal component analysis revealed five distinct and theoretically coherent factors: Sleep Difficulties, Impact of Child's Illness, Eating Difficulties, Hospital-Related Behavior Difficulties, and General Behavior Difficulties. The final 25-item measure, the Children's Oncology Child Adjustment Scale (ChOCs), demonstrated good internal consistency (α = 0.79-0.91). Validity of the ChOCs was demonstrated by significant correlations between the subscales and measures of corresponding constructs. CONCLUSION: The ChOCs provides a new measure of child adjustment difficulties designed specifically for pediatric oncology. Preliminary analyses indicate strong theoretical and psychometric properties. Future studies are required to further examine reliability and validity of the scale, including test-retest reliability, discriminant validity, as well as change sensitivity and generalizability across different oncology samples and ages of children. The ChOCs shows promise as a measure of child adjustment relevant for oncology clinical settings and research purposes.