Wolfe Joanne, Orellana Liliana, Ullrich Christina, Cook E Francis, Kang Tammy I, Rosenberg Abby, Geyer Russ, Feudtner Chris, Dussel Veronica
Joanne Wolfe, Christine Ullrich, Center for Outcomes and Policy Research, Dana-Farber Cancer Institute; Veronica Dussel, Dana-Farber Cancer Institute; Joanne Wolfe, Christine Ullrich, Boston Children's Hospital and Harvard Medical School; E. Francis Cook, Harvard School of Public Health, Boston, MA; Liliana Orellana, Deakin University, Victoria, Australia; Tammy I. Kang, Chris Feudtner, The Children's Hospital of Philadelphia and Perelman School of Medicine at the University of Pennsylvania, Philadelphia, PA; Abby Rosenberg and Russ Geyer Seattle Children's Hospital and Fred Hutchinson Cancer Research Center, University of Washington, Seattle, WA; and Veronica Dussel, Center for Research and Implementation in Palliative Care, Institute for Clinical Effectiveness and Health Policy, Buenos Aires, Argentina.
J Clin Oncol. 2015 Jun 10;33(17):1928-35. doi: 10.1200/JCO.2014.59.1222. Epub 2015 Apr 27.
Thousands of children are living with advanced cancer; yet patient-reported outcomes (PROs) have rarely been used to describe their experiences. We aimed to describe symptom distress in 104 children age 2 years or older with advanced cancer enrolled onto the Pediatric Quality of Life and Evaluation of Symptoms Technology (PediQUEST) Study (multisite clinical trial evaluating an electronic PRO system).
Symptom data were collected using age- and respondent-adapted versions of the PediQUEST Memorial Symptom Assessment Scale (PQ-MSAS) at most once per week. Clinical and treatment data were obtained from medical records. Individual symptom scores were dichotomized into high/low distress. Determinants of PQ-MSAS scores were explored using linear mixed-effects models.
During 9 months of follow-up, PQ-MSAS was administered 920 times: 459 times in teens (99% self-report), 249 times in children ages 7 to 12 years (96% child/parent report), and 212 times in those ages 2 to 6 years (parent reports). Common symptoms included pain (48%), fatigue (46%), drowsiness (39%), and irritability (37%); most scores indicated high distress. Among the 73 PQ-MSAS surveys administered in the last 12 weeks of life, pain was highly prevalent (62%; 58% with high distress). Being female, having a brain tumor, experiencing recent disease progression, and receiving moderate- or high-intensity cancer-directed therapy in the prior 10 days were associated with worse PQ-MSAS scores. In the final 12 weeks of life, receiving mild cancer-directed therapy was associated with improved psychological PQ-MSAS scores.
Children with advanced cancer experience high symptom distress. Strategies to promote intensive symptom management are indicated, especially with disease progression or administration of intensive treatments.
数以千计的儿童患有晚期癌症；然而，患者报告结局（PROs）很少被用于描述他们的经历。我们旨在描述104名2岁及以上患有晚期癌症的儿童的症状困扰，这些儿童参加了儿科生活质量与症状技术评估（PediQUEST）研究（一项评估电子PRO系统的多中心临床试验）。
使用根据年龄和应答者调整后的PediQUEST纪念症状评估量表（PQ-MSAS）收集症状数据，每周最多收集一次。临床和治疗数据从医疗记录中获取。将个体症状评分分为高/低困扰两类。使用线性混合效应模型探索PQ-MSAS评分的决定因素。
在9个月的随访期间，PQ-MSAS共进行了920次评估：青少年进行了459次（99%为自我报告），7至12岁儿童进行了249次（96%为儿童/家长报告），2至6岁儿童进行了212次（家长报告）。常见症状包括疼痛（48%）、疲劳（46%）、嗜睡（39%）和易怒（37%）；大多数评分表明困扰程度高。在生命的最后12周进行的73次PQ-MSAS调查中，疼痛非常普遍（62%；58%困扰程度高）。女性、患有脑肿瘤、近期疾病进展以及在之前10天接受中度或高强度癌症导向治疗与更差的PQ-MSAS评分相关。在生命最后12周，接受轻度癌症导向治疗与改善心理方面的PQ-MSAS评分相关。
患有晚期癌症的儿童经历着高度的症状困扰。需要采取策略促进强化症状管理，尤其是在疾病进展或进行强化治疗时。
