Background
Experiences and outcomes of cancer treatment and care are changing with the number of people living with and beyond cancer increasing every year. Cancer-related fatigue (CRF) is a distressing symptom experienced by many people after cancer treatment. RESTORE (www.macmillanrestore.co.uk) is a freely available web-based resource designed to enhance self-efficacy to manage CRF after primary treatment.
Aims
To detail the content of RESTORE and describe how user testing and a proof of concept randomised controlled trial (RCT) informed its design, development and subsequent refinement and implementation.
Methods
RESTORE was developed with survivors, clinicians and academic experts using a process including literature and patient resource reviews, two-phase user-testing, prototype development and refinement. RESTORE underwent a multi-centre parallel-group two-armed (1:1) exploratory RCT, involving 163 participants (>18 years; <5 years post treatment with moderate to severe fatigue) randomly assigned to RESTORE or a leaflet. Implementation of RESTORE involved collaboration between the research team, Macmillan Cancer Support and a web developer.
Results
RESTORE has five sections addressing different aspects of managing the impact of CRF on daily life, including: 1) and 2) an introduction to CRF and goal setting; 3) managing work and home life; 4) managing thoughts and feelings; 5) support with talking to others. RESTORE supports CRF self-management through self-monitoring levels of fatigue and self-efficacy, goal setting, patient stories and a fatigue diary. User testing found RESTORE to be acceptable and not burdensome, and the RCT found evidence of higher fatigue self-efficacy at 6 weeks in the intervention group than the comparator (mean difference 0.51 [-0.08 to 1.11]), although this decreased by 12 weeks.
Conclusions
RESTORE is an exemplar of how evidence can inform practice, with a free web-based resource developed on the basis of robust evaluation. It is a model for supporting self-management of other symptoms associated with cancer survivorship.