Patient/Family Education for Newly Diagnosed Pediatric Oncology Patients

There is a paucity of data to support evidence-based practices in the provision of patient/family education in the context of a new childhood cancer diagnosis. Since the majority of children with cancer are treated on pediatric oncology clinical trials, lack of effective patient/family education has the potential to negatively affect both patient and clinical trial outcomes. The Children’s Oncology Group Nursing Discipline convened an interprofessional expert panel from within and beyond pediatric oncology to review available and emerging evidence and develop expert consensus recommendations regarding harmonization of patient/family education practices for newly diagnosed pediatric oncology patients across institutions. Five broad principles, with associated recommendations, were identified by the panel, including recognition that (1) in pediatric oncology, patient/family education is family-centered; (2) a diagnosis of childhood cancer is overwhelming and the family needs time to process the diagnosis and develop a plan for managing ongoing life demands before they can successfully learn to care for the child; (3) patient/family education should be an interprofessional endeavor with 3 key areas of focus: (a) diagnosis/treatment, (b) psychosocial coping, and (c) care of the child; (4) patient/family education should occur across the continuum of care; and (5) a supportive environment is necessary to optimize learning. Dissemination and implementation of these recommendations will set the stage for future studies that aim to develop evidence to inform best practices, and ultimately to establish the standard of care for effective patient/family education in pediatric oncology

Eliciting the child's voice in adverse event reporting in oncology trials: Cognitive interview findings from the Pediatric Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events initiative: Reeve et al.

Adverse event (AE) reporting in oncology trials is required, but current practice does not directly integrate the child’s voice. The Pediatric Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE) is being developed to assess symptomatic AEs via child/adolescent self-report or proxy-report. This qualitative study evaluates the child’s/adolescent’s understanding and ability to provide valid responses to the PRO-CTCAE to inform questionnaire refinements and confirm content validity

Processing Information After a Child’s Cancer Diagnosis—How Parents Learn: A Report From the Children’s Oncology Group

© 2016, © 2016 by Association of Pediatric Hematology/Oncology Nurses. 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

Metabolites Associated With Fatigue and Physical Activity in Childhood Cancer

Introduction: Children and adolescents with cancer report increased fatigue and decreased physical activity, introducing risk factors for chronic disease and suppressed quality of life. Research suggests an inverse relationship between fatigue and physical activity, but the biological explanation is not well understood. The purpose of this study was to 1) explore metabolites associated with fatigue or physical activity and 2) to identify any shared metabolomic elements. Methods: Children, ages 8–17 years, attending a pediatric oncology summer camp provided Patient-Reported Outcome Measurement System® (PROMIS) Pediatric Fatigue assessments, physical activity data (steps/day), and urine samples pre- and post-camp. Differences in PROMIS Pediatric Fatigue scores and average daily steps were calculated using paired t-tests. Liquid chromatography-tandem mass spectrometry was conducted using a targeted metabolomic approach. Results: Thirty-two enrolled children had complete data. Fatigue scores decreased (pre-camp 45.1; post-camp 42.1; p = 0.04) while steps-per-day increased (pre-camp 6699; post-camp 16,021; p \u3c 0.001). Twenty-seven metabolites significantly differentiated (false discovery rate \u3c0.20) between low, medium, or high physical activity, while 8 metabolites discriminated between high and low fatigue. Indole-3-lactic acid, a tryptophan metabolite, was significantly associated with both physical activity and fatigue. Conclusion: This study provides evidence of metabolome associations with fatigue and physical activity in children with cancer. Overlapping metabolomic elements provide evidence of biological inter-connectivity and suggest areas for future research. Given the known evidence regarding the benefits of physical activity, and the potential interaction with fatigue, nurses should routinely assess patient reports of these elements and provide patient/family education related to fatigue management and physical activity goals

Metabolites Associated With Fatigue and Physical Activity in Childhood Cancer

Introduction: Children and adolescents with cancer report increased fatigue and decreased physical activity, introducing risk factors for chronic disease and suppressed quality of life. Research suggests an inverse relationship between fatigue and physical activity, but the biological explanation is not well understood. The purpose of this study was to 1) explore metabolites associated with fatigue or physical activity and 2) to identify any shared metabolomic elements. Methods: Children, ages 8-17 years, attending a pediatric oncology summer camp provided Patient-Reported Outcome Measurement System® (PROMIS) Pediatric Fatigue assessments, physical activity data (steps/day), and urine samples pre- and post-camp. Differences in PROMIS Pediatric Fatigue scores and average daily steps were calculated using paired t-tests. Liquid chromatography-tandem mass spectrometry was conducted using a targeted metabolomic approach. Results: Thirty-two enrolled children had complete data. Fatigue scores decreased (pre-camp 45.1; post-camp 42.1; p = 0.04) while steps-per-day increased (pre-camp 6699; post-camp 16,021; p < 0.001). Twenty-seven metabolites significantly differentiated (false discovery rate <0.20) between low, medium, or high physical activity, while 8 metabolites discriminated between high and low fatigue. Indole-3-lactic acid, a tryptophan metabolite, was significantly associated with both physical activity and fatigue. Conclusion: This study provides evidence of metabolome associations with fatigue and physical activity in children with cancer. Overlapping metabolomic elements provide evidence of biological inter-connectivity and suggest areas for future research. Given the known evidence regarding the benefits of physical activity, and the potential interaction with fatigue, nurses should routinely assess patient reports of these elements and provide patient/family education related to fatigue management and physical activity goals

Profile Comparison of Patient-Reported and Proxy-Reported Symptoms in Pediatric Patients With Cancer Receiving Chemotherapy

Importance: The variability in individual symptom and adverse event reporting between pediatric patient-reports and proxy-reports is widely reported. However, the question of whether symptom profiles based on reports from children with cancer and their caregivers are similar or disparate have not yet been studied. Objective: To compare proxy symptom reports with patient self-reports to assess alignment. Design, Setting, and Participants: A multicenter cohort study was conducted from October 2016 to December 2018 from data collected at 9 pediatric cancer centers. Participants were a convenience sample of family caregivers or proxies of children aged 7 to 18 years who had received disease-directed oncology treatment in the form of chemotherapy for at least 1 month. Data were analyzed identifying clusters of individuals (ie, latent profiles) based on various responses (ie, indicators) in August 2021. Exposures: The children of proxy participants received upfront chemotherapy. Children and proxies completed Patient-Reported Outcomes Measurement Information System (PROMIS) surveys at 2 time points: within 72 hours preceding treatment initiation and following the course of chemotherapy. Main Outcomes and Measures: The latent profile analysis methods were applied to caregiver-proxy reports of PROMIS Pediatric symptom and function measures (anxiety, depressive symptoms, pain interference, fatigue, psychological stress, and physical function-mobility). The instrument categorized respondents as high symptom suffering, medium symptom suffering, and low symptom suffering (hereafter, high, medium, and low symptom groups, respectively). Results: Of 580 approached proxies, 431 (368 [85.00%] were female) identified as legal guardians of children aged 7 to 18 years with a first cancer diagnosis (mean [SD] age, 13.03 [3.40] years; 235 [54.65%] were male). Proxy reports of children\u27s experiences based on the 5 proxy PROMIS measures comprised 3 distinct symptom profiles. The most common proxy assessments of children\u27s experiences were the moderate symptom groups (45.7% [197 of 431]) and the low symptom groups profiles (40.1% [173 of 431]). A high symptom groups profile emerged which represented 14.2% (61 of 431) of proxy assessments. The number of profiles and observed distribution of profile membership was similar between child and proxy reports. Proxy reports of individual symptoms generally recorded higher scores than child reports; however, no significant difference was observed between proxies and child profile model results for the PROMIS measures. Conclusions and Relevance: Results of this cohort study suggest that, at the level of symptom severity profile, proxy caregiver reports may approximate the children\u27s reports and may serve as a guide to care when the child is not able to self-report

Commonly Reported Adverse Events Associated With Pediatric Immunotherapy: A Systematic Review From the Children’s Oncology Group

Background:Immunotherapy is a new and promising approach to treating pediatric cancers. These types of therapies have unique mechanisms of action for identifying and fighting cancer, as compared with traditional chemotherapy, and therefore are associated with different therapy-related adverse events (AEs). The purpose of this systematic review was to review available evidence to: (a) identify commonly reported AEs associated with immunotherapy agents frequently used in pediatric oncology and (b) generate recommendations for nursing practice.Method:A clinical question was developed and used to guide the systematic literature review. Five immunotherapy agents (dinutuximab, blinatumomab, rituximab, inotuzumab ozogamicin, brentuximab vedotin) were selected for inclusion secondary to their high relevance to pediatric oncology. A literature search was conducted to locate articles published between January 1, 2003 and October 31, 2018.Results:Seventeen articles met eligibility criteria for inclusion and were evaluated using the Grading of Recommendations Assessment, Development, and Evaluation criteria. The most commonly reported AEs for the selected immunotherapy agents were identified and summarized. Strong recommendations are made for nurses to become familiar with the unique AE profiles associated with individual immunotherapy agents. Agent-specific recommendations for nursing practice regarding AEs associated with dinutuximab and rituximab were generated.Conclusions:Immunotherapy is rapidly emerging as an effective therapy for pediatric cancers. Nurses need to be aware of the breadth of agent-specific, immunotherapy-related AEs to appropriately monitor and manage patients receiving these therapies. Additional work is needed to confidently profile immunotherapy-related AEs in pediatric oncology and to develop agent-specific educational materials for patients/families

Weight change during childhood acute lymphoblastic leukemia induction therapy predicts obesity: A report from the Children\u27s Oncology Group.

BACKGROUND: Obesity is a well documented problem associated with childhood acute lymphoblastic leukemia (ALL) with increasing body mass index often observed during therapy. This study aims to evaluate if weight gain, early in therapy, is predictive of obesity at the end of treatment. PROCEDURE: In this secondary analysis, data from 1,017 high-risk ALL patients previously treated on a Children\u27s Oncology Group protocol (CCG study 1961) were reviewed. Logistic regression was used to examine whether change in BMI z-score at Induction or Delayed Intensification (DI) 1 were predictive of obesity at the end of therapy. RESULTS: The BMI z-score at the beginning of Induction and the change in BMI z-score during Induction were both significant predictors of obesity at the end of therapy. The change in BMI z-score during cycle 1 of DI was not found to be associated with obesity. CONCLUSIONS: It is well know that obesity at the beginning of therapy is predictive of obesity at the end of ALL therapy. The new, and more important, finding from this study is that even after adjusting for baseline weight, the increase in BMI z-scores during induction was an independent predictor of obesity at the end of therapy. Most researchers agree that prevention is the best form of treatment for obesity as it is difficult to reverse once it is present. This study suggests that monitoring weight trends during Induction may be useful in guiding healthcare practitioners in identifying which patients are at highest risk for obesity development so that early intervention may occur. Pediatr Blood Cancer 2015;62:434-439. © 2014 Wiley Periodicals, Inc