Fatigue in Focus Survey
Research type
Research Study
Full title
Fatigue in Focus Survey: a national electronic survey of the prevalence, impact and management of fatigue in teenage and young adult cancer patients
IRAS ID
170308
Contact name
Anna Spathis
Contact email
Sponsor organisation
Cambridge University Hospitals NHS Foundation Trust and the University of Cambridge
Clinicaltrials.gov Identifier
University of Cambridge reference, 609/M/C/1322
Duration of Study in the UK
0 years, 8 months, 31 days
Research summary
Fatigue is both the most common and most distressing symptom experienced by people with cancer. It appears to be particularly problematic in the teenage and young adult (TYA) years, when developmental and behavioural changes can cause fatigue even in healthy individuals. Importantly, fatigue is worsened by the inactivity it causes, leading to a destructive vicious cycle of loss of fitness and increasing fatigue. TYA patients are at a formative age that puts them at particular risk of unhelpful health behaviours such as inactivity. This has the potential to perpetuate fatigue, with resulting long-term disability, poor functioning and ill-health.
Despite the magnitude of the problem, cancer-fatigue is a neglected symptom in this young population, with limited research evaluating the experience, impact and management of this debilitating symptom. We plan to undertake the first survey focusing on fatigue in TYA cancer patients. The objectives are to establish the prevalence and severity of fatigue, to evaluate the impact of fatigue and its management, and to examine the feasibility of using electronic survey methodology in this patient group.
The survey will be conducted at three TYA cancer Principal Treatment Centres (PTC), Cambridge, Manchester and Southampton. An email containing the link to the brief electronic survey will be sent to all young people known to the PTC with a recorded email address, diagnosed or treated with cancer aged 13-24, and aged 16-27 at the time of completing the survey. A single email reminder will be sent to non-respondents. All participants will be entered into a prize draw.
This study is firmly underpinned by strong patient involvement, its design being influenced by a focus group, with ongoing feedback from an e-focus group. The NIHR CLAHRC East of England is funding 8hours/week of the Chief Investigator’s salary, to support her MD, which includes conduct of this survey.
REC name
East of England - Cambridgeshire and Hertfordshire Research Ethics Committee
REC reference
15/EE/0037
Date of REC Opinion
29 Jan 2015
REC opinion
Favourable Opinion