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).

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

Connecting Fun with Purpose: Interactive Teaching Strategies to Improve Bedside Care (225)

1CNE  The complex field of pediatric hematology/oncology truly demands clinical expertise of the bedside nurse to safely care for patients. Nurse educators are challenged more than ever to provide education in the classroom that will translate to meaningful application at the bedside (Curran, 2014). Current literature promotes learner preparation prior to class coupled with in-class interactive learning to apply and solidify knowledge (Galway, Corbett, Takaro, Tairyan, & Frank, 2014; Vujovic, 2016).

3:15 – 4:15 pm Friday, September 14

Beyond the Cure: The Children’s Oncology Group’s Efforts to Improve Outcomes for Pediatric Cancer Patients Long after Treatment has Finished (C223)

coglogo1CNE  Childhood cancer survivors are living longer than ever before, with overall survival rates exceeding 80%. As a result, survivors also are living with chronic late health effects related to their curative treatments, with 40% of survivors experiencing a severe, disabling, and life-threatening or fatal late effect at 30 years post-treatment. Late effects may include second malignancies, endocrinopathies, cardiomyopathy, infertility, pulmonary function deficits, renal/ocular/auditory disorders, neurocognitive deficits, and metabolic syndrome. Recent studies report that cumulative incidence of late effects may be even higher than previously reported, with survivors having 3 to 5 treatment-related chronic health conditions by the age of 50.

11:00 am – Noon Friday, September 14

Therapeutic and Supportive Care Protocols Paving the Way to a Brighter Future for Children with AML: Children’s Oncology Group Experience (C217)

coglogo1CNE  Acute leukemia is the most common malignancy in childhood and acute myeloid leukemia (AML) accounts for 15% of childhood leukemias. Survival for children with AML has improved, but overall survival is limited to 65%–70%. Improvement in survival for children with AML has been achieved by advances in knowledge contributed by various international cooperative group clinical trials. The majority of children newly diagnosed with AML in North America receive treatment on a Children’s Oncology Group (COG) clinical trial. The COG clinical trials for AML have investigated the role of risk stratification and intensification of therapy including the use of hematopoietic stem cell transplant. With the increase in intensity of chemotherapy, the COG recognized the limitations in delivering this therapy due to infection. Bacterial sepsis and invasive fungal infections are the leading cause of morbidity and treatment-related mortality in children receiving treatment for AML. To address this challenge, attempts to improve supportive care through COG’s Cancer Control trials have focused on prophylactic antibacterial and antifungal therapies.

11:00 am – Noon Friday, September 14

Improving Access to Hematopoietic Cell Transplantation Clinical Trials for Patients with Sickle Cell Disease (214)

1CNE  Sickle cell disease (SCD), the most common inherited hemoglobin disorder in the U.S., affects nearly 100,000 people. Yet progress for advancing curative treatments such as hematopoietic cell transplantation (HCT) has been limited in part due to the shortage of clinical trial (CT) participation by individuals most affected. How to improve clinical trial participation for patients is the $1 million dollar question for many healthcare providers. Participants attending this session will be able to identify evidence-based strategies to enhance patients’ trust and increase HCT CT participation.

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.

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.


Consulting, Arranging and Referring: How to Create the Connections Needed for a Successful CAR T Patient Experience (004)

3.25CNE  Leukemia is the number one cause of pediatric cancer mortality. In addition, there are poor outcomes for second and greater relapses of ALL, so there is a need for new novel therapies (Novartis, 2015). Chimeric antigen receptor-engineered T cells (CAR T cells) have yielded unprecedented efficacy in B cell malignancies, most remarkably in anti-CD19 CAR T cells for B cell acute lymphoblastic leukemia (B-ALL) with up to a 90% complete remission rate. (Wang, Wu Han, 2017). Because CAR-T therapy success can be contingent on factors such as disease burden and previous therapy, communication between referring and referral centers to facilitate rapid consultation is essential.

3:15 – 4:30 pm Saturday, September 15

Closing Keynote: Nurses Caring For Nurses: Changing the Culture of Nursing (105)

1CNE  In my 40+ years in nursing, I watched the nursing culture change, in some ways positively, in some ways, negatively. The negative changes I see worry me because they will not help us address important and challenging issues in the future, nor will they enhance the professional practice of nursing. Webster’s Dictionary defines “culture” as “ways of dressing, thinking, talking and acting...” and “the ideas, language, actions, and behaviors that define a given people.” When people look at nurses today, what do they see? When they listen to us talk, what do they hear?

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