Pediatric oncology nurses have an interest in developing research studies to address gaps in knowledge and improve patient care. Furthermore, nurses have identified smartphone technology as a potential tool for symptom assessment research. The purpose of this presentation is to discuss the development of a research protocol based on a single innovative idea, review of the status of this active research study, and provide education related to the use of technology in nursing research.
The symptom trajectory for children and adolescents with advanced cancer often varies, but symptom burden is believed to be high among children who die of pediatric cancer. Studies report that many children experience two to eight poorly controlled symptoms at the end of life, such as pain, poor appetite, dyspnea, fatigue, nausea/vomiting, constipation, and anxiety. Symptom information during end of life has primarily been collected using retrospective chart review and parent proxy reports. In 2015, the Symptom Assessment Study (SAS) team was awarded a mentored nursing research grant from the Alex’s Lemonade Stand Foundation. This study prospectively describes symptoms using a modified Memorial Symptom Assessment Scale in children with advanced cancer, and determines the feasibility of conducting symptom assessments electronically across care settings throughout the advanced cancer trajectory, including end of life. Innovative data collection techniques are utilized with children, adolescents, and their parent through the completion of bi-monthly symptom assessments using a smartphone. Symptom assessments are completed in any setting (e.g., home, clinic, outside facility or hospital) in order to have consistent data points over time without the burden of extra study visits. Additionally, the study explores timely communication of symptom assessments to the patient’s primary health care team (nurse, advanced practice provider, and oncologist). While evaluating the feasibility of electronic symptom assessment for these children, especially as he or she nears death, we have uncovered fascinating aspects of research during the vulnerable trajectory of advanced cancer. The research team is investigating how timely reporting of symptom assessments to healthcare team members influences clinical and operational outcomes, such as hospital acute and critical care length of stay, emergency department visits, and clinic visits.
- Opening Keynote: Secrets Everyone in Health Care Needs to Know (101)
- General Session: International Pediatric Hematology/Oncology Nursing Initiatives: Challenges and Opportunities (102)
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- A Sustainable Community Engagement Program Model to Address Hematopoietic Cell Transplantation Education Needs for Patients with Sickle Cell Disease (201)
- Nursing Management for the Successful Application of the Chimeric Antigen Receptor (CAR) T-Cell Immunotherapy (212)