Prospective Symptom Assessment in Children with Advanced Cancer
Despite advances in pediatric oncology treatments and technology, some children with cancer may die while receiving oncology treatments or from their disease. It has been reported that many children who die a cancer-related death may die while experiencing two to eight poorly controlled symptoms. Prevention of suffering, including effective symptom management, in children dying of cancer is a central value for clinicians in pediatric oncology.
In this study we want to prospectively describe symptoms in children with advanced cancer and determine the feasibility of conducting symptom assessments electronically in the home setting throughout the end of life trajectory. Furthermore, we want to determine if 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. Outcomes of this study are needed to contribute to our understanding of the symptom experience in a prospective way and evaluate if electronic data collection in the home setting enables clinicians to intervene in a timely way on any patient-reported symptoms that are increasing in frequency, severity, and/or level of distress. Results of this study may be used to drive models of care that better connect patients with their healthcare team in an electronic, less burdensome way, and improve the symptom experience during end of life.
The primary aim of this study is to determine the feasibility of conducting electronic symptom assessments across care settings in children with advanced cancer. This study will also prospectively describe symptom type, frequency, and level of distress using a modified version of the Memorial Symptom Assessment Scale, as well as explore if 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
Four additional institutions were chosen to participate in the multi-site study, and include:
• Children's Hospital Colorado
• Cincinnati Children's Hospital and Medical Center
• Children's Hospital Los Angeles
• University of Minnesota Masonic Children's Hospital
There are a total of 36 Advanced Practice Nurses, 8 Registered Nurses, 9 Physicians, and 10 Research Staff participating in the research team, representing bone marrow transplant, solid tumor, neuro-oncology, leukemia/lymphoma, late effects, and palliative care.
The study opened for enrollment at the first site starting in June, 2016. Below are highlights of the study's status at the end of year one, including:
• 5 of 5 sites have initiated enrollment
• 44 subjects enrolled (target 120)
• 97% data completeness
Dr. Montgomery and the research team have experienced successes and lessons learned throughout the fellowship and research project. The team's cohesiveness and teamwork has provided a core foundation for the multi-site research. Additionally, the integration of technology and a REDCap® database has streamlined data collection across sites. Dr. Montgomery noted challenges, including operationalizing eligibility criteria and sensitivity to Phase I study reporting requirements on symptoms.