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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. Chris May Trial co- ordinator Chloe Grimmett RESTORE Researcher Claire Foster Chief Investigator & Head of MSRG 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 Carol Hill MSRG administrat or Michelle Myall RESTORE Researcher Lynn Calman RESTORE researche r

RESTORE: An online resource to support people with cancer related fatigue after primary cancer treatment Macmillan Survivorship Research Group, Faculty

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Page 1: RESTORE: An online resource to support people with cancer related fatigue after primary cancer treatment Macmillan Survivorship Research Group, Faculty

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.

Chris May

Trial co-ordinator

Chloe Grimmett

RESTORE Researcher

 

Claire Foster

Chief Investigator &

Head of MSRG

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 interventionA 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 involvedIf 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] can find out more about the RESTORE study on our website: http://www.soton.ac.uk/msrg

Carol Hill

MSRG administrator

Michelle Myall

RESTORE Researcher

Lynn Calman

RESTORE researcher