A multicentre survey of teenage and young adult cancer patients: fatigue is prevalent, poorly managed and perpetuates long term


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Anna Spathis1,Helen Hatcher1,Sara Booth2,Faith Gibson3,Patrick Stone4,Laura Abbas1,James Brimicombe2,Pia Thiemann2,Martin McCabe5,Rachel Campsey6,Louise Hooker7,Wendy Moss1,Jane Robson1,Stephen Barclay2
1Cambridge University Hospitals NHS Foundation Trust,2University of Cambridge,3Great Ormond Street Hospital,4University College London,5University of Manchester,6Christie NHS Foundation Trust,7University Hospital Southampton NHS Foundation Trust

Abstract

Background

Fatigue is established as the most prevalent symptom in adults with cancer, with exercise the most effective intervention. The particular vulnerability of teenage and young adult (TYA) patients to fatigue has only recently been recognised, and fatigue hinders key developmental needs such as independence and socialisation. There have been no previous surveys focusing on TYA fatigue, nor interventional trials. This survey aimed to evaluate the severity, impact and current management of TYA cancer-related fatigue.

Method

An electronic survey was sent to all patients aged 16-27 known to 3 of the 13 TYA cancer Principal Treatment Centres in the UK. One reminder was sent to non-responders.

Results

Responders (n=80, response rate 41%) were aged 12-24 years at diagnosis and were 4-121 months after treatment (mean 27, SD 25; no difference from non-responders). Fatigue was the most prevalent and severe of 11 symptoms, occurring in 85% of respondents (68/80). It correlated strongly with poor quality of life (r=0.62, p<0.001). 41% (28/68) received no symptom management. Although advice to exercise was the most frequent management (27/68), paradoxically the greatest impact of fatigue was on the ability to exercise and only 8/27 found exercise advice helpful. Of note, fatigue was more severe (p=0.007) and less successfully managed (p=0.006) in those more than one year after the end of cancer treatment, compared to those within a year of treatment.

Conclusion

This survey provides the first evidence that fatigue can worsen beyond the accepted triggers of cancer diagnosis and treatment. This may reflect perpetuation by a deconditioning vicious cycle, TYAs being at particular risk of maladaptive behaviours such as inactivity. Current management is inadequate, with fatigue hindering the exercise that could ameliorate it. Research evaluating early intervention to promote activity should be prioritised, to prevent long-term perpetuation of this prevalent and debilitating symptom.