Transcript RESTORE: An online resource to support people with cancer related

RESTORE: An online resource to support people with cancer related fatigue
after primary cancer treatment
Macmillan Survivorship Research Group, Faculty of Health Sciences, University of Southampton
What is RESTORE?
RESTORE is an online resource developed to provide clinical information about cancer related fatigue (CRF), examples of
how others manage, and support with setting personal goals to manage cancer related fatigue in everyday life. The
RESTORE intervention is divided into five sessions designed to be completed at weekly intervals. Sessions one and two
cover an introduction to CRF, causes and effects, and the concept of goal setting . Participants can then choose to visit
sessions three to five depending on what they deem relevant to them. Participants have a choice of areas to focus on
• Diet, sleep, exercise, home life, work
• Managing thoughts and feelings about fatigue
• Talking to others about fatigue
Why is it important ?
Cancer-related fatigue is a common problem often reported during chemotherapy and radiotherapy treatment and many
people still experience fatigue once treatment is over. Fatigue may have an impact on individuals in a number of ways such
as how they feel about themselves, whether engage in everyday activities, and may also affect their relationships with
others.
What will it tell us?
This feasibility study was designed to understand whether RESTORE is
acceptable to people and seems to have potential benefit, i.e. it has an impact
on self-confidence to manage fatigue, before it is tested on a large scale to
determine whether it is effective.
What information is being collected?
This study took place in two parts:
1. Developing the intervention
A prototype intervention was developed systematically including a literature
review of the evidence for managing fatigue and identification of existing patient
resources and establishing a team with expertise in the field of web-based
intervention design, cancer-related fatigue and people affected by cancer, who
commented on each session as it was being developed. The prototype
intervention then underwent two rounds of user testing with 11 cancer survivors,
The prototype was refined after each round of user testing.
2. Testing the intervention - exploratory randomised controlled trial
In order to determine if RESTORE is acceptable, feasible and has the potential to
improve confidence, we compared it to Macmillan’s ‘Coping with Fatigue’ leaflet.
Half of the participants were randomly assigned to receive the leaflet and the
other half RESTORE . We also invited participants to take part in an interview to
talk about their experiences of the RESTORE study. Recruitment to the
RESTORE study has been very successful with 163 cancer survivors taking part.
We are now closed to recruitment. Results of the trial will be available late 2014.
Who is doing this research?
The study is being conducted by the Macmillan Survivorship Research Group (MSRG) in the Faculty of Health Sciences at the
University of Southampton which is funded by Macmillan Cancer Support.
More information and getting involved
If you have any questions or comments or would like to know more about the RESTORE study we would really like to hear from
you; please get in touch with the research team. Tel: 02380 596885 E-mail: [email protected]
You can find out more about the RESTORE study on our website: http://www.soton.ac.uk/msrg
Claire Foster
Chief Investigator &
Head of MSRG
Chloe
Grimmett
RESTORE
Researcher
Michelle Myall
Chris May
RESTORE
Researcher
Trial coordinator
Lynn
Calman
RESTORE
researcher
Carol Hill
MSRG
administrator