Janice S. Withycombe

Weight patterns in children with higher risk ALL: A report from the Children's Oncology Group (COG) for CCG 1961.

This retrospective analysis defined and described patterns and predictors of weight change during treatment in children with acute lymphocytic leukemia (ALL) with high‐risk features who received treatment on Childrens Cancer Group protocol CCG 1961.

Use of a Fitness Tracker to Promote Physical Activity in Children With Acute Lymphoblastic Leukemia: Fitness Tracker to Promote Physical Activity

Children with cancer identify fatigue as a pervasive symptom, which increases during the corticosteroid pulse in acute lymphoblastic leukemia (ALL) maintenance. The FitBit® is a fitness tracker that downloads activity measurements to the Internet in real time. In this feasibility study, we explored if children who received daily FitBit® coaching for 2 weeks before a maintenance steroid pulse had an increase in steps per day and determined the relationship between steps per day prepulse and fatigue postpulse.

Weight change during childhood acute lymphoblastic leukemia induction therapy predicts obesity: A report from the Children's Oncology Group

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.

Comment on: Use of a Fitness Tracker to Promote Physical Activity in Children with Acute Lymphoblastic Leukemia

Background Children with cancer identify fatigue as a pervasive symptom, which increases during the corticosteroid pulse in acute lymphoblastic leukemia (ALL) maintenance. The FitBit® is a fitness tracker that downloads activity measurements to the Internet in real time. In this feasibility study, we explored if children who received daily FitBit® coaching for 2 weeks before a maintenance steroid pulse had an increase in steps per day and determined the relationship between steps per day prepulse and fatigue postpulse. Procedure Seventeen children in ALL maintenance, aged 6–15, wore the FitBit® for 3 days to establish a baseline. A tailored weekly step goal was then set with the child and parent. Daily emails with feedback and FitBit® screenshots were sent over the 2-week intervention. Self-report of fatigue was measured at baseline, after 2 weeks (i.e. before the steroid pulse), and after 5 days of steroids. Results There was a trend toward increased steps per day from weeks 1–2 (P = 0.079); fatigue was low and did not increase during the corticosteroid pulse. A significant correlation (r = −0.66, P = 0.005) was found between the steps per day during week 2 and fatigue after the steroid pulse with higher steps associated with lower fatigue. Conclusions The intervention was feasible in this small sample. The average steps each time period (week 1, week 2, and during steroids) was over 10,000, demonstrating that children with ALL can be active during treatment. Physical activity may be protective of fatigue during a corticosteroid pulse.

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.

Adverse event (AE) reporting in oncology trials is required, but current practice does not directly integrate the childs 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 childs/adolescents 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

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.

Patient/Family Education for Newly Diagnosed Pediatric Oncology Patients Consensus Recommendations from a Children’s Oncology Group Expert Panel

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.

Concept-elicitation phase for the development of the pediatric patient-reported outcome version of the Common Terminology Criteria for Adverse Events

Symptoms arising from disease or treatment are subjective experiences. Insight into pediatric oncology treatment side effects or symptoms is ideally obtained from direct inquiry to the ill child. A concept‐elicitation phase in a patient‐reported outcome (PRO) instrument design provides an opportunity to elicit childrens voices to shape cancer symptom selection and terminology.

Outcome and Prognostic Factors in Stage III Favorable-Histology Wilms Tumor: A Report From the Children's Oncology Group Study AREN0532.

Background The National Wilms Tumor Study (NWTS) approach to treating stage III favorable-histology Wilms tumor (FHWT) is Regimen DD4A (vincristine, dactinomycin, and doxorubicin) and radiation therapy. Further risk stratification is required to improve outcomes and reduce late effects. We evaluated clinical and biologic variables for patients with stage III FHWT without combined loss of heterozygosity (LOH) at chromosomes 1p and 16q treated in the Childrens Oncology Group protocol AREN0532. Methods From October 2006 to August 2013, 588 prospectively treated, centrally reviewed patients with stage III FHWT were treated with Regimen DD4A and radiation therapy. Tumor LOH at 1p and 16q was determined by microsatellite analysis. Ineligible patients (n = 5) and those with combined LOH 1p/16q (n = 40) were excluded. Results A total of 535 patients with stage III disease were studied. Median follow-up was 5.2 years (range, 0.2 to 9.5). Four-year event-free survival (EFS) and overall survival estimates were 88% (95% CI, 85% to 91%) and 97% (95% CI, 95% to 99%), respectively. A total of 58 of 66 relapses occurred in the first 2 years, predominantly pulmonary (n = 36). Eighteen patients died, 14 secondary to disease. A better EFS was associated with negative lymph node status ( P < .01) and absence of LOH 1p or 16q ( P < .01), but not with gross residual disease or peritoneal implants. In contrast, the 4-year EFS was only 74% in patients with combined positive lymph node status and LOH 1p or 16q. A total of 123 patients (23%) had delayed nephrectomy. Submitted delayed nephrectomy histology showed anaplasia (n = 8; excluded from survival analysis); low risk/completely necrotic (n = 7; zero relapses), intermediate risk (n = 63; six relapses), and high-risk/blastemal type (n=7; five relapses). Conclusion Most patients with stage III FHWT had good EFS/overall survival with DD4A and radiation therapy. Combined lymph node and LOH status was highly predictive of EFS and should be considered as a potential prognostic marker for future trials.

A Comprehensive Survey of Institutional Patient/Family Educational Practices for Newly Diagnosed Pediatric Oncology Patients A Report From the Children’s Oncology Group

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.