Parents of a child newly diagnosed with cancer must receive an extensive amount of information before their child’s initial hospital discharge; however, little is known about best practices for providing this education. An interpretive descriptive study design was used to describe actual and preferred educational content, timing, and methods among parents of children newly diagnosed with cancer prior to their child’s first hospital discharge. Twenty parents of children diagnosed with various malignancies participated in individual interviews 2 to 12 months after their child’s diagnosis. Data were analyzed using constant comparative analysis. Education delivery occurred in a telling manner at diagnosis transitioning to a reciprocal process of teaching during the inpatient stay, then primarily back to telling immediately before discharge. Parents expressed a variety of preferred learning styles but noted that their preferences were rarely assessed by health care providers. Multiple factors influenced parents’ ability to process educational information received during their child’s initial hospitalization. Findings suggest that nursing practices should include assessing for influencing factors, providing anticipatory guidance, and incorporating parents’ preferred learning style into the educational plan.

PURPOSE: To examine concordance in symptomatic adverse event (AE) grading using the Common Terminology Criteria for Adverse Events (CTCAE 4.0) for clinicians and its patient-reported outcome (PRO) versions for children (Ped-PRO-CTCAE) and caregivers (Ped-PRO-CTCAE [Caregiver]). METHODS: Children age 7-18 years with a first cancer diagnosis, their clinicians, and caregivers completed CTCAE-based measures before starting a treatment course (T1) and after the treatment (T2). Grades (0-3) were assigned by each reporter for 15 core AEs spanning physical and mental health. Mean grades were compared between reporters using two-sample t-tests; agreement was estimated using weighted kappa (κ) statistics. Multivariable mixed regression models were used to evaluate associations of clinical factors with AE reporting concordance. Significance was set at α = .05 (two-sided). RESULTS: There were 438 child-clinician-caregiver triads with complete data at either T1 or T2. For children, the mean age was 13 years (standard deviation = 3.4), 53.7% were male, 32.6% non-White, and 56.4% had leukemia/lymphoma. At T1, clinician mean AE grades were significantly lower (ie, better) than children for all AEs and remained significantly lower at T2 except for constipation, nausea, anorexia, neuropathy, and anxiety. Caregiver mean AE grades were similar to children at T1 and significantly higher (ie, worse) at T2 for nausea, vomiting, anorexia, pain, fatigue, anxiety, and depression. Agreement for child-clinician grading was poor-to-fair at T1 (κ range, 0.08-0.34) and T2 (0.11-0.35), and for child-caregiver, was fair-to-good at T1 (0.34-0.65) and T2 (0.24-0.60). No factors were consistently associated with reporter concordance across AEs. CONCLUSION: Compared with children, symptomatic AEs were consistently under-reported by clinicians with low agreement and over-reported by caregivers with low-moderate agreement. Direct reporting by children using Ped-PRO-CTCAE or similar measures should be routinely incorporated for toxicity assessment in clinical trials.

Background: Recognizing and addressing illness-related distress has long been a priority for pediatric oncology nurses and the Children’s Oncology Group. Although symptoms are known to be highly prevalent during treatment for childhood cancer, there is currently no guidance for how often symptoms should be assessed, which symptoms should be prioritized for assessment, and how the data should be collected. Methods: The Nursing Discipline, within Children’s Oncology Group, hosted a one-day Interprofessional seminar titled “Symptom Assessment During Childhood Cancer Treatment: State of the Science Symposium.” Following the symposium, an expert panel was assembled to review all available evidence, including information presented and collected during the symposium. Consensus-building discussions were held to identify common themes and to produce recommendations for clinical practice. Results: Four recommendations emerged including (1) the identification of priority “core” symptoms for assessment; (2) inclusion of the child’s voice through self-report, when possible; (3) consistent documentation and communication of symptom assessment results; and (4) implementation of patient/family education related to symptoms. Discussion: Symptom recognition, through appropriate assessment, is the first step in symptom management. The goal for developing and sharing these recommendations is to promote consistent and comparable clinical practice across institutions in regard to symptom assessment during childhood cancer therapy. Integration of these recommendations will set the stage for future studies related to the frequency of symptoms across disease groups, projection of anticipated symptom trajectories, development of evidence-based teaching tools for common symptoms, and evaluation of patient outcomes with enhanced symptom assessment and management.

Patient/family education is an important component of nursing practice and is essential to the care of children newly diagnosed with cancer. Practices regarding patient/family education in Children’s Oncology Group (COG) treatment centers have not been well described. We used an Internet-based survey to determine current patient/family educational practices at COG institutions; participation rate was 90.5% (201/222). Patient/family education was delivered primarily by an individual (rather than a team) at 43% of institutions. Advanced practice nurses had primary responsibility for providing education at 32% of institutions. “Fever” was the most frequently reported topic considered mandatory for inclusion in education for newly diagnosed patients. More than half of institutions reported using checklists and/or end-of-shift reports to facilitate health care team communication regarding patient/family education, and 77% reported using the “teach-back” method of assessing readiness for discharge. Thirty-seven percent of institutions reported delays in hospital discharge secondary to the need for additional teaching. An understanding of current practices related to patient/family education is the first step in establishing effective interventions to improve and standardize educational practices in pediatric oncology.

Background: The Children’s Oncology Group (COG) is the only organization within the National Cancer Institute’s National Clinical Trials Network dedicated exclusively to pediatric cancer research. The purpose of this article is to provide an overview of COG’s organizational structure, to characterize its institutional and individual membership, and to summarize enrollments onto COG clinical trials. Method: Data from 2013 to 2015 were compiled from sources internal (Network Operations, Statistics and Data Center, Chair’s Office) and external (American Hospital Association, American Nurses Credentialing Center) to COG, to present a comprehensive overview of COG’s structure, individual and institutional membership, and group operations. Results: In 2016, COG comprised 8,785 individuals from 223 member institutions, across seven countries. An average of 9,661 new patients were registered with COG per year over the most recent (2013-2015) 3-year period. Over the same 3-year time frame, there were an average of 16,836 enrollments onto therapeutic (i.e., treatment) and nontherapeutic (e.g., epidemiology, survivorship, biology) trials per year. Conclusions: COG institutions have diverse characteristics related to size, geographical location, and infrastructure. Individual membership also reflects diversity with representation from over 28 disciplines and groups. The diversity of COG institutions and individual members allows for unique perspectives and contributions to science unified under a common goal to enroll children/adolescents onto clinical trials. COG’s collaborative, multidisciplinary approach to science functions to support the development of research that seeks to continually improve outcomes for children and adolescents with cancer.

Background: Multiple symptoms occur in children receiving cancer therapy. Decreased steps per day may be associated with burdensome symptoms. Objective: To evaluate associations between self-reported symptoms (pain interference, anxiety, depressive symptoms, psychological stress, and fatigue) and function (physical function-mobility and physical activity) and cumulative symptom count with steps per day. Methods: Five sites enrolled English-speaking children, 8 to 17 years, receiving treatment for a first cancer diagnosis. Patient-reported outcome (PRO) surveys were administered before (T1) and after (T2) a course of chemotherapy. Garmin VivoFit 3 (Garmin International, Olathe, KS) accelerometers were worn 7 days prior to each data point. Univariate changes in scores over time were evaluated with dependent-sample t tests. Pearson correlations examined associations between PRO domains and step count. Multivariable mixed-effect models examined associations between steps and PROs. Results: Participants’ (n = 65) steps per day decreased during treatment (4099 [T1] and 3135 [T2]; P < .01), with larger reductions observed during hospitalization and in younger children compared with adolescents. Steps significantly correlated with PROMIS (Patient-Reported Outcome Measurement Information System) Pediatric physical activity and physical function-mobility. Decreased steps per day were associated with increased fatigue and cumulative symptom count. Conclusions: In children and adolescents with cancer, steps per day can serve as an indicator of fatigue, cumulative symptom count, physical activity, and physical functioning-mobility. Implications for Practice: Child self-reports of physical activity and physical function are valid during cancer therapy and should be captured. In the absence of self-report, decreasing step count may prompt additional assessments related to fatigue or cumulative symptom count and trigger early interventions to support physical activity and physical function-mobility.