1Department of Palliative, Rehabilitation and Integrative Medicine, University of Texas MD Anderson Cancer Center, Houston, Texas.
2Department of Palliative Care, Dell Seton Medical Center at The University of Texas, Austin, Texas.
J Palliat Med. 2019 Aug;22(8):894-901. doi: 10.1089/jpm.2018.0545. Epub 2019 Feb 13.
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. 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. 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. 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 ( = 0.005) and nervousness ( < 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 ( < 0.001). 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.
系统的症状评估并不是癌症患儿的常规护理标准。许多知名的症状评估工具冗长或难以融入日常儿科姑息治疗实践中。我们创建了一系列简短而简单的问题，以便系统地向儿童及其照顾者提出。主要目标是确定有多少符合条件的儿童和照顾者能够完成评估。次要目标包括记录咨询时的症状负担，评估儿童和照顾者之间以及儿童/照顾者与转诊医疗团队之间在症状报告中的一致性程度。一系列系统问题被呈现给所有照顾者（如果在场）和在初次接受儿科姑息治疗咨询时年龄在 7 岁或以上的儿童。对 122 对连续的儿童/照顾者进行了调查。108 名符合条件的照顾者中有 107 名（99%）和 97 名符合条件的儿童中有 83 名（86%）完成了调查。食欲不振（儿童 72/83，87%；照顾者 89/107，83%）和疼痛（儿童 71/83，86%；照顾者 86/107，80%）是最常报告的症状。照顾者比儿童更频繁地报告易怒（=0.005）和紧张（<0.001）。转诊医疗团队显著低估了心理和其他不太明显的临床症状，如食欲不振、疲劳和睡眠障碍（<0.001）。我们的问题系列很容易被儿童和照顾者完成。对转介至姑息治疗的癌症儿童进行系统的症状评估应成为真正的护理标准。
