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Children 2018, 5(4), 45; https://doi.org/10.3390/children5040045

From the Child’s Word to Clinical Intervention: Novel, New, and Innovative Approaches to Symptoms in Pediatric Palliative Care

1
Aflac Cancer and Blood Disorders Center of Children’s Healthcare of Atlanta, Atlanta, GA 30322, USA
2
Pediatric Palliative Care, Children’s Healthcare of Atlanta, Atlanta, GA 30322, USA
3
Department of Pediatrics, Division of Pediatric Hematology/Oncology, Emory University, Atlanta, GA 30322, USA
4
Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, Boston, MA 02215, USA
5
Department of Pediatric Hematology/Oncology, Dana-Farber Cancer Institute, Boston Children’s Hospital Cancer and Blood Disorders Center, Boston, MA 02215, USA
*
Author to whom correspondence should be addressed.
Received: 19 December 2017 / Revised: 12 March 2018 / Accepted: 21 March 2018 / Published: 28 March 2018
(This article belongs to the Special Issue Pediatric Palliative Care)
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PDF [314 KB, uploaded 3 May 2018]

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. View Full-Text
Keywords: pediatric palliative care; quality of life; symptom management; hospice; patient-reported outcomes; mobile apps pediatric palliative care; quality of life; symptom management; hospice; patient-reported outcomes; mobile apps
This is an open access article distributed under the Creative Commons Attribution License which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited (CC BY 4.0).
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Brock, K.E.; Wolfe, J.; Ullrich, C. From the Child’s Word to Clinical Intervention: Novel, New, and Innovative Approaches to Symptoms in Pediatric Palliative Care. Children 2018, 5, 45.

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