Heavy to carry - A survey of parents' and healthcare professionals' perceptions of cancer-related fatigue in children and young people
Heavy to carry - A survey of parents' and healthcare professionals' perceptions of cancer-related fatigue in children and young people
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DOI：
10.1097/00002820-200501000-00004
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发表时间：
2005-01-01
期刊：
影响因子：
2.6
通讯作者：
Sepion, B
中科院分区：
文献类型：
--
作者：
Gibson, F;Garnett, M;Sepion, B
与癌症相关的疲劳是一种普遍存在的症状，但往往未被认识到，有可能影响孩子和家庭的生活。人们对疲劳的生理和行为方面知之甚少，对这种症状的模式也知之甚少。本研究的目的是从患有癌症的儿童和年轻人的父母和医疗保健专业人员（HCPs）的角度调查癌症相关疲劳，并检查其对生活质量的影响。对22个英国儿童癌症研究小组中心中的4个中心的患者父母进行了横断面问卷调查；其中20个中心的医务人员也接受了调查。家长和照顾者的应答率为42% (95/224)，HCPs的应答率为35%（235/679）。结果表明，疲劳是普遍存在的。56%的医护人员认为“大多数”或“所有”患者都有中度疲劳；57%的家长表示，患者每周至少有一次感到疲劳。数据表明，家长和医护人员都认为疲劳是一个严重的问题。医疗保健专业人员表示，他们推荐治疗的疲劳患者的平均百分比为29%。大多数人（59%;138）建议休息和放松。总的印象是，医护人员和家长都承认，儿童和年轻人可能会感到疲劳。认识到这种症状的重要性是改善未来管理和提供能够帮助儿童和家庭的策略的关键的第一步。
Cancer-related fatigue is a prevalent, but often underrecognized, symptom with the potential to impact the lives of both the child and the family. There is little known about the biological and the behavioral dimensions of fatigue, and not about the patterns of this symptom. The aim of this study was to investigate cancer-related fatigue from the perspective of parents of children and young people with cancer and from the perspective of healthcare professionals (HCPs) and to examine its impact on quality of life. A cross-sectional, questionnaire-based survey was undertaken with parents of patients attending 4 of the 22 United Kingdom Childhood Cancer Study Group centers; HCPs from 20 of these centers were also surveyed. Response rates were 42% for parents and caregivers (95/224) and 35% for HCPs (235/679). Results showed that fatigue was prevalent. Fifty-six percent of HCPs thought "most" or "all" patients experienced moderate fatigue; 57% of parents said that the patient experienced fatigue at least once a week. Data demonstrate that fatigue was perceived to be a significant problem by parents and HCPs. Healthcare professionals indicated that the mean percentage of patients who experience fatigue, to whom they recommended a treatment, was 29%. Rest and relaxation were recommended by the majority (59%; 138). The overall impression is that both HCPs and parents acknowledge that children and young people are likely to experience fatigue. Recognition of the significance of this symptom is a crucial first step in improving future management and offering strategies that can help both child and family.