Teenage and young adult (TYA) cancer patients describe debilitating fatigue. The impact of fatigue is particularly detrimental at this age because it hinders key developmental needs, such as independence. Although exercise and psychological treatments are the most effective management approaches in older adults, TYAs have unique healthcare needs and research findings cannot be extrapolated to younger patients. The aim of this programme of research was to increase understanding of cancer-related fatigue (CRF) in TYAs, in order to develop a non-pharmacological fatigue intervention.

Three multimethod studies have been conducted, underpinned by self-efficacy theory. 1) A systematic literature review synthesised existing research evidence. 2) A multicentre electronic survey evaluated the experience of TYA CRF and its current management across the UK. 3) A multiphase, longitudinal, qualitative study, involving patient-parent dyads, has led to the co-design of a fatigue intervention.

This work has confirmed that fatigue is the most prevalent and distressing symptom experienced by TYAs with cancer, and is an independent predictor of poor quality of life. Fatigue persists long after the end of cancer treatment, perpetuated by vicious cycles of emotional and behavioural responses to the symptom. Cognitive fatigue has a particularly negative impact and influences the ability to work, be in education or socialise. Parents also experience adverse consequences, including fatigue-related interpersonal tensions. Despite the enormity of the problem, fatigue is currently inadequately managed. TYAs described extensive, age-related intervention needs, including a preference for videos over written information. The co-designed intervention is predominantly cognitive in approach with, for example, mindfulness techniques being more acceptable than energy conservation. TYAs require structured activity support, given the physical reserve of youth and fear that activity may worsen fatigue.

Young patients have inspired, and helped drive, this programme of work. Engagement with the research process was high, and participants embraced the innovative research methods. Information has been generated that will optimise the design of the future definitive trial to test intervention effectiveness.