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.
Feasibility of gathering data via smartphone technology was also assessed. A modified version of the Memorial Symptom Assessment Scale (MSAS) was used to measure symptoms and was administered to child/parent dyads electronically every 2 weeks. Information regarding disease status and cancer treatment was collected. Data was analyzed using descriptive statistics and regression analysis. A total of 47 children and adolescents and 47 parents participated in the study. The most frequently reported symptoms by children with advanced cancer and parents were pain (n=195/562, 34.70%), lack of energy (n=186/561, 33.16%), and nausea (n=156/560, 27.86%). Presence of disease (P=<0.0001), recent disease progression (P=0.0002), and receiving cancer therapy (P=0.0004) were significant factors associated with pain. High intensity cancer therapy was a significant factor on pain frequency (P=0.0445) and level of distress (P=0.0224). Increased understanding of the symptom experience may promote communication with children and timely intervention which is a priority in nursing practice.
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