5:00–6:00 pm Thursday, September 5

Symptom Assessment and Associated Biomarkers (206)

Altered sleep and increased fatigue are reported as two of the most distressing symptoms during treatment and into survivorship. Prevalence of disrupted sleep and fatigue have been reported to be higher among patients treated for CNS tumors, those treated with radiation therapy, solid tumors, and Hodgkin Lymphoma; however, changes in sleep and fatigue have been reported across all cancer diagnoses. To elucidate the biological mechanism underlying these symptoms, symptom science has evolved from descriptive studies of symptom occurrence to the measurement of biological processes.

3:45–4:45 pm Thursday, September 5

Self-reported Symptom Experiences and Self-management Strategies used by Children, Adolescents and Young Adults with Cancer: What Can We Learn? (201)

Obtaining relief from symptoms of disease and treatment is essential to the quality of life of children, adolescents, and young adults (AYAs) receiving treatment for cancer. With person-centered care, clinicians must understand the individual symptom experience of every child and AYA and promote optimal symptom management. Mobile technology-based resources, such as apps, are emerging as novel ways to support symptom reporting by patients during and between clinical encounters and to teach symptom self-management skills.

12:10–12:30 pm Friday, September 6

Paper Presentation: Research Topics — Factors Associated with Completing Pediatric Patient Reported Outcomes: Age, Literacy, Race (216-3)

Patient reported outcome (PRO) measures are needed to fully understand the subjective experiences of children during cancer treatment. Literacy skills are necessary for children to independently complete PRO instruments. The association of age, race, and literacy in school-aged children undergoing cancer therapy is not well-documented, and it is unknown how these factors impact the child’s ability to understand and complete PROs. Age is currently used to decide when patient-reported outcome measures can be collected.

The purpose of this research study was to examine the relationship between literacy and a child’s age, race, and ability to understand and complete a new instrument—the Pediatric PRO-Common Terminology Criteria for Adverse Events (CTCAE). Children aged 7-20 years, from 8 sites, participated in cognitive interviews as part of the validation process for the Pediatric PRO-CTCAE. The Word Reading component of the Wide Range Achievement Test (WRAT) was used to evaluate literacy. Logistic regression and multivariable linear regression were used to examine relationships between variables. Wide variations in literacy skills were noted across all ages in the 140 participants. Most 7 year olds (63%) required help with reading, although words were often recognized when stated out loud. A one-unit increase in WRAT score, which equates to an increasing higher literacy level, was associated with a decline in words/questions identified by the children as “hard to understand” (p=0.017). Age and literacy were highly correlated (B -0.804, p=0.045). Although literacy scores increased with age, older children (16-20 years) were more likely to fall behind the expected literacy level. Children, even those with lower literacy scores, were able to complete the PRO-CTCAE, indicating that a variety of factors may influence comprehension (i.e., child’s developmental stage, prior health experiences, vocabulary). There was no significant association between race and literacy in this study. The findings from this study demonstrate that age is not always an accurate proxy for literacy level, and therefore it is recommended that special consideration be given to literacy in conjunction with PRO use in children with cancer.

11:50am –12:10 pm Friday, September 6

Paper Presentation: Research Topics — Perceptual Responses during Exercise Testing with Adolescents and Young Adults with Sickle Cell Disease: What Does Tired Really Mean (216-2)

Exercise has an important role in health promotion and is recommended for individuals with sickle cell disease (SCD) to enhance physical and mental health. However, exercise is challenging for them because exercise capacity is limited due to the pathophysiology of the disease, health risks such as vaso-occlusion are associated with excessive exercising, and exercise guidelines are vague and do not focus on improving exercise capacity or fitness. Mild to moderate exercise is advised, but self-regulation of these intensities is difficult. To regulate intensity, one SCD recommendation is to stop exercising at the first sense of fatigue.

Suzanne Ameringer, PhD RN
CNE Hours
11:30–11:50 am Friday, September 6

Paper Presentation: Research Topics — Physical Activity, the Childhood Cancer Symptom Cluster - Leukemia, and Cognitive Function: A Longitudinal Mediation Analysis (216-1)

Children undergoing treatment for leukemia report co-occurring symptoms of fatigue, sleep disturbances, pain, nausea, and depression as a symptom cluster. Physical activity (PA) is essential for development and may influence symptom severity. Children with leukemia are at risk for cognitive impairments from CNS directed therapies. Longitudinal parallel-process (LPP) modeling is a type of analysis that examines relationships between two or more longitudinal processes. Using an LPP model, we were able to explore relationships among the functions of PA and cognition with symptom clusters over the trajectory of leukemia treatment.


I-131 Metaiodobenzylguanidine Therapy: It Takes a Village; The Experience Gained at Three Institutions (007)

Despite aggressive treatment, patients with high-risk neuroblastoma have a 40%-60% chance of suffering a relapse. Recent improvements in survival have resulted from changes in treatment during consolidation (tandem myeloablative stem cell transplants) and post-consolidation (immunotherapy) time periods. The neuroblastoma community has been struggling to identify treatments that can be integrated into induction therapy with the goal of further improving survival rates. Consequently, I-131 Metaiodobenzylguanidine (I-131 MIBG) has been moved to the induction treatment period due to its history of success in the treatment of patients with relapsed refractory disease (approximately 40% of patients have a favorable response to treatment with I-131 MIBG).


Jennifer Saggio, MSN CRNP
Dawn Bartock, MSN CPNP CPHON®
Kevin Edwards, BSRT
Sage Heyman, LSW
Dennis Reid, BSN CPHON®
Alyssa Yost, BSN RN

ssa Yost, BSN RN
$110 for APHON members
$140 for non-members
CNE Hours
RX Hours
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