Weaver Meaghann S, Reeve Bryce B, Baker Justin N, Martens Christa E, McFatrich Molly, Mowbray Catriona, Palma Diana, Sung Lillian, Tomlinson Deborah, Withycombe Janice, Hinds Pamela
Department of Oncology, St. Jude Children's Research Hospital, Memphis, Tennessee.
Department of Oncology, Children's National Health Systems, Washington, DC.
Cancer. 2016 Jan 1;122(1):141-8. doi: 10.1002/cncr.29702. Epub 2015 Sep 30.
BACKGROUND: Symptoms arising from disease or treatment are subjective experiences. Insight into pediatric oncology treatment side effects or symptoms is ideally obtained from direct inquiry to the ill child. A concept-elicitation phase in a patient-reported outcome (PRO) instrument design provides an opportunity to elicit children's voices to shape cancer symptom selection and terminology. METHODS: Through semistructured, one-on-one, voice-recorded interviews, symptom data were collected from 96 children with cancer between the ages of 7 and 20 years who were undergoing oncologic treatment at 7 pediatric oncology sites in the United States and Canada. RESULTS: The mean number of symptoms reported per child over the prior 7 days was 1.49 (range, 0-7; median, 1; standard deviation, 1.56). The most common symptoms across all age groups were tiredness or fatigue, nausea or vomiting, aches or pains, and weakness. There was not a statistically significant correlation between self-reported wellness and the number of reported symptoms (r = -0.156, n = 65, P = .215) or the number of symptoms reported by age group or diagnosis type. Forty participants reported experiencing a change in their body in the past week, with one-third of these changes unanticipated. Only through direct questions about feelings were emotional symptoms revealed because 90.6% of interviewees who discussed feelings (48 of 53) did so only in the context of direct questioning on feelings. Adolescents were more likely than younger children to discuss feelings as part of the interview. CONCLUSIONS: Concept elicitation from children and adolescents has the potential to enable researchers to develop age-appropriate, accurately representative PRO measures.
背景:疾病或治疗引发的症状属于主观体验。对儿科肿瘤治疗副作用或症状的深入了解,理想情况下应通过直接询问患病儿童来获取。患者报告结局(PRO)工具设计中的概念引出阶段,为引出儿童的声音以确定癌症症状选择和术语提供了契机。 方法:通过半结构化的一对一录音访谈,从美国和加拿大7个儿科肿瘤治疗点接受肿瘤治疗的96名7至20岁癌症儿童中收集症状数据。 结果:在过去7天里,每个儿童报告的症状平均数量为1.49(范围为0至7;中位数为1;标准差为1.56)。所有年龄组中最常见的症状是疲倦或乏力、恶心或呕吐、疼痛以及虚弱。自我报告的健康状况与报告的症状数量(r = -0.156,n = 65,P = 0.215)或按年龄组或诊断类型报告的症状数量之间,不存在统计学上的显著相关性。40名参与者报告在过去一周身体发生了变化,其中三分之一的变化是意料之外的。只有通过直接询问感受,才能揭示情绪症状,因为90.6%讨论感受的受访者(53人中的48人)仅在直接询问感受的背景下才会提及。青少年比年幼儿童更有可能在访谈中讨论感受。 结论:从儿童和青少年中引出概念,有可能使研究人员开发出适合年龄、具有准确代表性的PRO测量方法。
Cochrane Database Syst Rev. 2022-2-1
Rev Lat Am Enfermagem. 2022
J Pain Symptom Manage. 2025-2
Support Care Cancer. 2024-8-16
Rev Lat Am Enfermagem. 2022
J Gen Intern Med. 2014-8
CA Cancer J Clin. 2014-1-31
Health Qual Life Outcomes. 2013-6-20
Health Qual Life Outcomes. 2012-2-22
Health Qual Life Outcomes. 2010-9-21