Saturday, September 15
7:30 – 8:45 am
CNE Presentation

Healing Hope and the Promise of Healthy Survivorship — Recognition Breakfast for Certified Oncology Nurses* (RB)

Please note that the breakfast has reached the max capacity.

1CNE  Wendy S. Harpham is a doctor of internal medicine, 27-year cancer survivor, best-selling author, nationally recognized speaker and patient advocate. From both sides of the stethoscope, Wendy has used her useful perspective to help patients become Healthy Survivors -- namely, survivors who get good care and live as fully as possible.

Since her diagnosis, Wendy has played an important role in raising awareness among clinicians and in empowering patients to talk with their healthcare team about the challenges of survivorship, such as coping with post-treatment fatigue, raising healthy children when a parent has cancer, and participating in clinical trials.

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Speaker:
Wendy S. Harpham, MD
2:15 – 3:15 pm Saturday, September 15

Patient and Family Education for Newly Diagnosed Pediatric, Adolescent, and Young Adult Oncology Patients: Development of an Interdisciplinary Education Roadmap (233)

1CNE  The education of newly diagnosed pediatric, adolescent, and young adult (AYA) oncology patients and their caregivers is a critical component of successful oncology care. Patient education affects patient safety, timeliness and cost of care, treatment and research compliance, and the patient and family experience. Successful delivery of patient education is challenging because of the complex medical content conveyed, logistical challenges of healthcare delivery across multidisciplinary service lines (e.g. inpatient v. outpatient with providers from medicine, nursing, psychology, social work), and patient and family variables that impact health and access to care (e.g. language, health literacy, coping skills, family and community support, insurance, financial stability, housing, transportation).

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11:30 am – 12:30 pm Saturday, September 15

Comprehensive Care for Thalassemia (226)

1CNE  Thalassemia is becoming a more common diagnosis seen in pediatric hematology/oncology centers. The term thalassemia describes a group of very complex diseases that requires thorough, comprehensive care to improve outcomes and quality of life for these patients. A complicating factor is that patients often are immigrants or refugees with language and cultural barriers and other socioeconomic issues. The care of these patients require a multidisciplinary approach and a strong understanding of the pathophysiology, specific complications, current treatments, and new and emerging therapies.

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3:15 – 4:15 pm Friday, September 14

Running on Empty: Inherited Bone Marrow Failure (219)

1CNE Inherited bone marrow failure syndromes are a diverse group of hematologic disorders. Despite the name, some children have new, not inherited, genetic mutations. These mutations can result in congenital abnormalities or disease in specific organs or increased cancer predisposition. Through a series of patient vignettes we will follow six patients with common syndromes highlighting clinical presentation, diagnostic evaluation, and evidence-based treatment and monitoring recommendations. We also will explore the impact of a genetic diagnosis on the psychological and social well-being of families as the parents grapple with the decision whether to pursue genetic testing for themselves or their other children.

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11:00 am – Noon Friday, September 14

Managing Depression and Anxiety in Childhood Cancer (212)

1CNE  The period in which children are diagnosed with cancer and undergo treatment coincides with a time of critical physical, cognitive, behavioral, and social development. The mental health of children with cancer is particularly vulnerable due to the inherent uncertainties of the diagnosis, prognosis, therapy, and disruption of their daily lives. Psychiatric diagnoses such as anxiety and depression are often underdiagnosed, undertreated, and extend beyond the conclusion of cancer therapy. This presentation will address appropriate screening and assessment tools to enhance the pediatric oncology nurse’s comfort in identifying pathologic depression and anxiety, exploring treatment modalities such as psychotherapy, psychopharmacology (including appropriate dosing and monitoring), and when to refer patients for further care.

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4:45 – 5:45 pm Thursday, September 13

DNR, DNET, DNI: The Alphabet Soup of Resuscitation (208)

1CNE  Caring for infants, children, adolescents, and young adults through the end of life is challenging. "Getting the DNR" is terminology that many nurses are used to hearing; they may even be the ones asking for clarification of "code status" as their patients come closer to the end of their lives. This presentation will clarify definitions and abbreviations commonly used including DNR, AND, and DNET, and the meaning these terms have for the hematology/oncology team, patients, and families. How we talk with families will be reviewed, including discussions of data, what we are not going to do, and asking them to make impossible decisions. Finally, suggestions for discussing goals of care and recommendation and the role of hope will be discussed and practiced.

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3:30 – 4:30 pm Thursday, September 13

Are Your Patients with Advanced Cancer Suffering? A Nurse-Led Study Utilizing Technology to Measure Symptoms (C205)

coglogo1CNE  Nurses and nurse practitioners have the opportunity to be at the forefront of supportive care research using current technology. Through collaboration between the COG Nursing Research Subcommittee and Alex’s Lemonade Stand Foundation, a mentored nursing grant funded a multisite study investigating how children with advanced cancer experience symptoms. Minimizing suffering, including effective symptom management, in children with advanced cancer is a central value for pediatric oncology clinicians (Nuss et al., 2005). Patient-reported outcomes have been used in pediatric oncology symptom-related research (Baggot et al., 2012); however the majority of literature specific to symptoms during palliative or end-of-life care for children with advanced cancer is based upon medical record reviews and to a lesser extent, patient self–report (Hinds et al., 2007; Wolfe et al, 2015). The study purpose was to prospectively describe symptom frequency, severity, and distress level in children and adolescents with advanced cancer using patient self-report and parent proxy.

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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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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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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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