Abstract
Despite vast improvements in disease-based treatments, many children live with life-threatening disorders that cause distressing symptoms. These symptoms can be difficult to comprehensively assess and manage. Yet, frequent and accurate symptom reporting and expert treatment is critical to preserving a patient’s physical, psychological, emotional, social, and existential heath. We describe emerging methods of symptom and health-related quality-of-life (HRQOL) assessment through patient-reported outcomes (PROs) tools now used in clinical practice and novel research studies. Computer-based and mobile apps can facilitate assessment of symptoms and HRQOL. These technologies can be used alone or combined with therapeutic strategies to improve symptoms and coping skills. We review technological advancements, including mobile apps and toys, that allow improved symptom reporting and management. Lastly, we explore the value of a pediatric palliative care interdisciplinary team and their role in assessing and managing distressing symptoms and minimizing suffering in both the child and family. These methods and tools highlight the way that novel, new, and innovative approaches to symptom assessment and management are changing the way that pediatrics and pediatric palliative care will be practiced in the future.
Highlights
Over 400,000 US children live with life-threatening or chronic, complex conditions [1,2].Over 12,400 children are diagnosed with cancer annually in the United States [3]
We describe the current state of symptom assessment and management within pediatric palliative care, with a focus on pediatric oncology
Many technology-based patient-reported outcomes (PROs) collection systems permit assessment of symptoms and health-related quality-of-life (HRQOL) in between clinic visits, at times that the clinician would not otherwise understand the patient’s condition. This is especially important since patients may be unwilling to call the office, and routine PRO assessment may provide opportunities to attend to symptoms before they escalate
Summary
Over 400,000 US children live with life-threatening or chronic, complex conditions [1,2]. While relatively little comparison of technology-based versus paper-based modes of administration has been conducted, one study found data equivalence between app-based and other delivery methods [30] Another (n = 19) study of children with or without a speech or voice disorder found that the scores did not differ between paper and pencil and electronic handheld device groups. Many technology-based PRO collection systems permit assessment of symptoms and HRQOL in between clinic visits, at times that the clinician would not otherwise understand the patient’s condition. This is especially important since patients may be unwilling to call the office, and routine PRO assessment may provide opportunities to attend to symptoms before they escalate
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