J L Edwards

Heavy to carry: a survey of parents' and healthcare professionals' perceptions of cancer-related fatigue in children and young people.

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.

Experience of fatigue in adolescents living with cancer.

This article reports on a small-scale exploratory study conducted with cohorts of adolescents during and after treatment of cancer to explore experiences of fatigue and perceptions of its impact on functioning. A concurrent mixed method design was used to enable detailed understanding of the phenomenon of fatigue in these groups of individuals through convergence of quantitative and qualitative data. Participants completed an investigator-designed Fatigue and Quality of Life Diary for a period of 1 week. Second, they took part in a semistructured interview to explore issues around fatigue and functioning in more detail. Eight adolescents undergoing treatment participated in the study, along with 6 in early remission (1-2 years off treatment) and 8 receiving follow-up (5 or more years off treatment). Data gained from these sources suggested that fatigue can be a considerable problem for adolescents during and after treatment, and that it may not necessarily abate quickly. Some individuals perceived that their quality of life remained compromised many years after treatment, and it seemed that fatigue might play an important part in this. These preliminary findings suggest that research into management of fatigue in this adolescent group is warranted, along with research and development to determine how best to provide supportive care once treatment finishes.