Self‐reported fatigue in children with advanced cancer: Results of the PediQUEST study

Abstract

Background Pediatric cancer-related fatigue is prevalent and significantly impairs health-related quality of life, yet its patterns and correlates are poorly understood. We aimed to describe fatigue prospectively reported by children with advanced cancer, and to identify factors associated with fatigue and associated distress. Methods Children (≥2 years) with advanced cancer (N=104) or a parent at three academic hospitals reported their symptoms at most weekly, over nine months, using the computer-based Pediatric Quality of Life Evaluation of Symptoms Technology (PediQUEST) system. PediQUEST administered a modified version of the Memorial Symptom Assessment Scale (PQ-MSAS) as part of a randomized controlled trial. Clinical information was abstracted from medical records. Primary outcomes were 1) fatigue prevalence (yes/no response to PQ-MSAS fatigue item) and 2) fatigue distress (composite score of severity, frequency and bother). Multivariable models were constructed to identify factors independently associated with fatigue prevalence and scores reflecting fatigue distress (i.e., burden). Results Of 920 reports, 46% (n=425) noted fatigue. When reported, fatigue was of high frequency in 41% (n=174), severity in 25% (n=107) and bother in 34% (n=143). Most reports (84%, n=358) were associated with scores indicating fatigue distress. In multivariable analyses, fatigue was associated with older age, lower hemoglobin and distress from particular symptoms (anorexia, nausea, sleep disturbance, sadness and irritability). In contrast, fatigue distress was associated with distress from nausea, cough and pain. Conclusions Fatigue is common among children with advanced cancer, and is often highly distressing. Interventions focused on uncontrolled symptoms may ease fatigue distress in children with advanced cancer.

Specialist paediatric palliative care for children and young people with cancer: A mixed-methods systematic review

“…Although the broader literature implies that other differences we observed, such as reduced hospital stays and more advance care planning, are indicative of better care, 63 there is no evidence that these changes in the delivery of care reflect family preferences, 48,51,57 or lead to reduced symptom burden, which studies continue to show is significant for children with cancer. 5,90,97 The integration of findings from evaluation studies and those which have explored factors affecting access tells us that while end-of-life care may be different for children who receive specialist palliative care, children who receive this are also different to those who do not, particularly in terms of their disease profile and care processes. Synthesis of the qualitative studies go some way to explaining these differences, highlighting in particular the central role of clinicians' emotions, beliefs and attitudes in shaping referral practices, and the ongoing uncertainty about when to initiate palliative care and whether this should be provided by a specialist service or the oncology team.…”

Associations of Age, Gender, and Family Income with Quality of Life in Children With Advanced Cancer

“…The terms advanced/ relapsed/refractory cancer, QOL, and pediatric/child in the title or abstract yielded 38 results, of which 10 evaluated QOL in children with advanced cancer. Most of the publications describe the outcomes of the PediQUEST study (Bilodeau et al, 2019;Ilowite et al, 2018;Rosenberg et al, 2016;Ullrich et al, 2018;Wolfe et al, 2014Wolfe et al, , 2015. This was a multisite, prospective, longitudinal study at three urban, academic medical centers evaluating symptom distress and QOL in children with advanced cancer who were >2 years of age.…”

“…This was a multisite, prospective, longitudinal study at three urban, academic medical centers evaluating symptom distress and QOL in children with advanced cancer who were >2 years of age. The central findings of the PediQUEST study were that cancer symptoms, such as pain, sadness, fatigue, vomiting, and anorexia were associated with distress and lower QOL in children with advanced cancer (Rosenberg et al, 2016;Ullrich et al, 2018;Wolfe et al, 2014Wolfe et al, , 2015.…”

Self-Reported Fatigue in Chinese Children and Adolescents During Cancer Treatment

“…Understanding the interrelations between fatigue and its co-occurring symptoms provides a new lens for symptom assessment and management. Specifically, recent studies have suggested that a child experiencing a high level of symptom distress is more likely to experience fatigue (Ullrich et al, 2018) and that a single-item fatigue baseline measure could significantly predict symptom profile (fatigue, depression, anxiety, and pain interference) in terms of high or low symptom severity (Wang et al, 2018). The evidence underscores the usefulness of fatigue research findings for clinical applications.…”