title: Heavy to carry: a survey of parents' and healthcare professionals' perceptions of cancer-related fatigue in children and young people.
abstract: Cancer-related fatigue is a prevalent, but often under-recognized, 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.
authors.affiliation: Centre for Nursing and Allied Health Professions Research, Great Ormond Street Hospital for Children NHS Trust, Great Ormond Street, London WC1N 3JH, UK. Gibsof@gosh.nhs.uk
authors.forename: Faith
authors.initials: F
authors.lastname: Gibson
authors.forename: Marion
authors.initials: M
authors.lastname: Garnett
authors.forename: Alison
authors.initials: A
authors.lastname: Richardson
authors.forename: Jacqueline
authors.initials: J
authors.lastname: Edwards
authors.forename: Beth
authors.initials: B
authors.lastname: Sepion
mesh_terms: D000293:Adolescent; D001291:Attitude of Health Personnel; D017028:Caregivers / Q000523:psychology*; D002648:Child; D002675:Child, Preschool; D003430:Cross-Sectional Studies; D005221:Fatigue / Q000453:epidemiology* / Q000209:etiology / Q000451:nursing; D005260:Female; D006306:Health Surveys; D006801:Humans; D008297:Male; D009369:Neoplasms / Q000451:nursing / Q000503:physiopathology*; D010290:Parents / Q000523:psychology*; D010465:Perception; D015995:Prevalence; D011788:Quality of Life; D011795:Surveys and Questionnaires; D006113:United Kingdom / Q000453:epidemiology