Paper Presentations

3:30 – 3:50 pm Thursday, September 13

Paper Presentation: Supporting Parents Across the Treatment Continuum — Reasons, Hopes, Risks, Expectations: Qualitative Interviews of Parents Consenting to Genomic Sequencing for their Child (204-1)

1CNE  Basis of inquiry: Genomic sequencing is rapidly being incorporated into care for patients diagnosed with cancer. Little is known about why parents of children with cancer consent to sequencing and how they understand and weigh the risks, benefits, and uncertainty inherent in testing.

Purpose/Objectives: This qualitative inquiry was part of the Genomes 4 Kids study which included somatic and germline sequencing in a cohort of 301 prospectively identified pediatric oncology patients with leukemias, central nervous system (CNS), or non-CNS solid tumors treated at St. Jude Children’s Research Hospital. The aims of this aspect of the study were to identify reasons for participation given by parents enrolled in the larger study and perceived risks, benefits, expectations, and hopes.

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3:50 – 4:10 pm Thursday, September 13

Paper Presentation: Supporting Parents Across the Treatment Continuum — Change in Genetic Knowledge of Parents Consenting to Clinical Genomic Sequencing for their Child with Cancer Following a Two-Phase Consent (204-2)

1CNE  Basis of inquiry: During informed consent, providers often present information in a complicated manner and may not differentiate between standard cancer treatment and the research objectives of a clinical trial. While clinical genomic sequencing is complex, it is important to understand how parental genetic knowledge may influence future decisions, including study participation and comprehension of test results. To increase parental understanding, this study utilized a two-phase consent process.

Purpose/Objectives: Evaluate change in parental genetic knowledge at the completion of a two-phase consent process.

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4:10 – 4:30 pm Thursday, September 13

Paper Presentation: Supporting Parents Across the Treatment Continuum — Adding a Parent to the Brain Tumor Team: Evaluation of Peer Support Intervention for Parents of Children with Brain Tumors (204-3)

1CNE  The physical and neurocognitive symptoms of childhood brain tumors present profound challenges to patients and families. Parents and caregivers of children diagnosed with brain tumors experience numerous stressors due to the complexities and uncertainties associated with treatment, long-term effects, and risk of relapse (Hutchinson, Willard, Hardy, & Bonner, 2009). To address these challenges, the California Chapter of the Pediatric Brain Tumor Foundation provides hospital-based support to parents of children with brain tumors from a Veteran Parent (VP). A mixed-methods, cross-sectional study was designed to evaluate the effectiveness of this intervention utilizing validated tools to compare parental resilience and impact of illness on the family between parents who met with the VP and those who did not.

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4:45 – 5:05 pm Thursday, September 13

Paper Presentation: Engaging Patients and Providers in the Research Process — Engaging Children and Healthcare Providers in the Co-Design of a Mobile, Technology-Based Symptom Assessment App (210-1)

1CNE Basis of inquiry: Mobile technology supports child-centric approaches to symptom reporting by incorporating game-based features to support children in reporting symptoms.

Purpose/Objectives: We describe the development of a child-centric symptom assessment app using school-age children (6–12 years) receiving treatment for cancer and pediatric oncology healthcare providers as co-designers. 

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5:05 – 5:25 pm Thursday, September 13

Paper Presentation: Engaging Patients and Providers in the Research Process — KAM: Kids are Moving—An Exercise Program for Children with Cancer (210-2)

1CNE  Basis of inquiry: During cancer treatment, children are significantly less active than their healthy peers. Inactivity persists into survivorship, negatively influencing health and quality of life. Children with cancer report that fatigue is one of the most distressing, treatment-related symptom impacting their quality of life; yet children with increased physical activity (PA) have less fatigue. In this study, we sought to evaluate if children could decrease their level of fatigue over the trajectory of treatment by increasing their physical activity.

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5:25 – 5:45 pm Thursday, September 13

Paper Presentations: Engaging Patients and Providers in the Research Process — The Influence of Pediatric Oncology Summer Camp Attendance on Physical Activity, Fatigue, and Oxidative Stress (210-3)

1CNE  Basis of Inquiry: Childhood cancer patients and survivors are less physically active and report increased fatigue. Improved physical activity may reduce fatigue. Over 130 summer camps serve pediatric oncology patients and survivors. Camps promote physical activity and offer a unique opportunity to explore the relationship between physical activity and fatigue.

Purpose: This study was conducted to determine if summer camp attendance increased physical activity in childhood cancer patients and survivors and how physical activity interacts with fatigue. An exploratory aim was to examine changes in oxidative stress which is hypothesized to impact fatigue.

Methods: A repeated measures study design was utilized. Accrual of 60 children over 2 years planned (data collection ends June 2018).

Eligibility: (a) 8–17 years; (b) English speaking; (c) current diagnosis or history of cancer; (d) willingly wear physical activity monitor daily x 2 weeks (beginning 7 days before camp); (e) complete surveys and provide urine samples x 2; (f) attend a 6 day Oncology Summer Camp (g) no neurological disorders/syndromes; (h) without physical limitations. Physical activity was reported as steps/day and intensity level as minutes/day. Oxidative stress measured as urine isoprostane. Paired t-test were conducted to examine change in scores for the Pediatric PROMIS measures, steps/day and isoprostane levels. Pearson’s r was used to calculate correlation coefficients.

Findings/Outcomes: Thirty children enrolled in year 1.

Demographics: 57% male; 70% Caucasian, 20% Asian, 7% African American; 77% off therapy; 40% Leukemia/Lymphoma, 20% Solid tumors, 20% CNS tumors, 20% Unknown. Mean steps/day increased during camp by 7709 (p < .001; 95% CI; 6209 to 9210). Fatigue (p=0.47), anxiety (p=.021) and depression (p=.005) all decreased during camp. Weak non–significant negative correlation, in first 24 samples, between change in oxidative stress and physical activity (r = –.144; p=.50).

Disclaimer: [1 CH] will be awarded for attending all three paper presentations presented during this timeslot. Partial credit is not available.

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11:00 – 11:20 am Friday, September 14

Paper Presentation: Assessing Symptoms and Symptom Trajectories — Symptom Trajectories among Adolescents during Hematopoietic Stem Cell Transplantation (216-1)

1CNE  Basis of inquiry: Symptom management is major role of pediatric hematopoietic stem cell transplant (HSCT) nurses and a thorough understanding of symptom experiences is needed. Symptoms are complex and their frequency, severity, and distress change over time. Research is needed to identify symptoms over time (trajectories) among adolescents undergoing HSCT.

Purpose/Objectives: 
The aim of this study was to describe symptom trajectories including symptom frequency, severity, and distress among adolescents from pre-HSCT to 100 days post HSCT.

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11:20 – 11:40 am Friday, September 14

Paper Presentation: Assessing Symptoms and Symptom Trajectories — Effect of Proton Therapy on Patient Reported Health-Related Quality of Life and Symptoms in Patients with Craniopharyngioma (216-2)

1CNE  Basis of inquiry: Craniopharyngioma is a brain tumor located near the hypothalamic-pituitary axis. Surgery and conventional photon-based radiation therapy result in long term tumor control; however, survivors are known to have disruptions in patient sleep, endocrine and neurocognitive function, as well as health related quality of life (HRQOL). Proton therapy is a newer form of radiation therapy. Little is known about its effect on patient–reported HRQOL and symptoms when used in the management of craniopharyngioma.

Purpose/Objectives: To describe patient-reported HRQOL and symptoms before and during proton therapy in patients with craniopharyngioma.

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11:40 am – Noon pm Friday, September 14

Paper Presentation: Assessing Symptoms and Symptom Trajectories — Assessment Tools for Peripheral Neuorpathy in Pediatric Oncology Patients: A Systemic Review (216-3)

1CNE  Chemotherapy agents used for the treatment of pediatric cancer cause many side effects including peripheral neuropathy. Using appropriate assessment tools to accurately identify peripheral neuropathy is an important part of pediatric oncology care. A systematic review was performed to determine reliable assessment tools to identify peripheral neuropathy in children receiving vincristine.

Disclaimer: [1 CH] will be awarded for attending all three paper presentations presented during this timeslot. Partial credit is not available.

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3:15 – 3:35 pm Friday, September 14

Paper Presentations: Professional Practice Issues — Moral Distress Among Pediatric Oncology Nurses: A National Sample (222-1)

1CNE  Because of the unique nature of nurse-patient relationships and the role of the nurse, nurses are routinely put into situations that expose them to the development of moral distress. Moral distress has been identified as the psychological disequilibrium, negative feeling state, and suffering experienced when nurses make a moral decision and then either do not or feel that they cannot follow through with their chosen course of action. This session will describe results of a mixed-methods study of APHON members, examining moral distress and its relationship to prognosis-related communication.

Disclaimer: [1 CH] will be awarded for attending all three paper presentations presented during this timeslot. Partial credit is not available.

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