TY - JOUR
T1 - Systematic Symptom Reporting by Pediatric Palliative Care Patients with Cancer
T2 - A Preliminary Report
AU - Madden, Kevin
AU - Magno Charone, Maira
AU - Mills, Sarah
AU - Dibaj, Seyedeh
AU - Williams, Janet L.
AU - Liu, Diane
AU - Bruera, Eduardo
N1 - Publisher Copyright:
© Copyright 2019, Mary Ann Liebert, Inc., publishers 2019.
PY - 2019/8
Y1 - 2019/8
N2 - Background: Systematic symptom assessment is not a standard of care in children with cancer. Many well-known symptom assessment tools are lengthy or difficult to integrate into a daily pediatric palliative care practice. We created a series of brief and simple questions to be systematically given to children and their caregivers. Objective: The primary objective was to determine the percentage of eligible children and caregivers exposed to the questions that were able to complete the assessment. Secondary objectives included documenting the symptom burden at the time of consultation, evaluating the level of agreement in symptom reporting between children and caregivers, as well as between children/caregivers and the referring medical team. Design: A series of systematic questions were presented to all caregivers (if present) and children who were seven years of age or older at the time of initial consultation with pediatric palliative care. Results: One hundred twenty-Two consecutive children/caregiver dyads were given the survey. One hundred seven of 108 (99%) eligible caregivers and 83 of 97 (86%) eligible children completed the survey. Lack of appetite (child-72/83, 87%; caregiver-89/107, 83%) and pain (child-71/83, 86%; caregiver-86/107, 80%) were the most commonly reported symptoms. Caregivers reported irritability (p = 0.005) and nervousness (p < 0.001) more frequently than children. Referring medical teams significantly underdiagnosed psychological and other less clinically evident symptoms such as lack of appetite, fatigue, and sleep disturbance (p < 0.001). Conclusions: Our series of questions is easy to complete by children and caregivers. Systematic symptom assessment of children with cancer referred to palliative care should become a true standard of care.
AB - Background: Systematic symptom assessment is not a standard of care in children with cancer. Many well-known symptom assessment tools are lengthy or difficult to integrate into a daily pediatric palliative care practice. We created a series of brief and simple questions to be systematically given to children and their caregivers. Objective: The primary objective was to determine the percentage of eligible children and caregivers exposed to the questions that were able to complete the assessment. Secondary objectives included documenting the symptom burden at the time of consultation, evaluating the level of agreement in symptom reporting between children and caregivers, as well as between children/caregivers and the referring medical team. Design: A series of systematic questions were presented to all caregivers (if present) and children who were seven years of age or older at the time of initial consultation with pediatric palliative care. Results: One hundred twenty-Two consecutive children/caregiver dyads were given the survey. One hundred seven of 108 (99%) eligible caregivers and 83 of 97 (86%) eligible children completed the survey. Lack of appetite (child-72/83, 87%; caregiver-89/107, 83%) and pain (child-71/83, 86%; caregiver-86/107, 80%) were the most commonly reported symptoms. Caregivers reported irritability (p = 0.005) and nervousness (p < 0.001) more frequently than children. Referring medical teams significantly underdiagnosed psychological and other less clinically evident symptoms such as lack of appetite, fatigue, and sleep disturbance (p < 0.001). Conclusions: Our series of questions is easy to complete by children and caregivers. Systematic symptom assessment of children with cancer referred to palliative care should become a true standard of care.
KW - palliative care
KW - patient reported outcomes
KW - pediatric
KW - pediatric oncology
KW - symptom assessment
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U2 - 10.1089/jpm.2018.0545
DO - 10.1089/jpm.2018.0545
M3 - Article
C2 - 30759031
AN - SCOPUS:85070464387
SN - 1096-6218
VL - 22
SP - 894
EP - 901
JO - Journal of palliative medicine
JF - Journal of palliative medicine
IS - 8
ER -