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Co-designing a web-based intervention (RESTORE) to support self-management of cancer-related fatigue in people living with a brain tumour

Co-designing a web-based intervention (RESTORE) to support self-management of cancer-related fatigue in people living with a brain tumour
Co-designing a web-based intervention (RESTORE) to support self-management of cancer-related fatigue in people living with a brain tumour
Purpose: Cancer-related fatigue (CRF) is a debilitating symptom commonly reported by people with a brain tumour (BT). Many interventions have been developed to reduce CRF; however, few have been evaluated in people with BT despite the unique functional deficits experienced by this population. We aimed to explore the appropriateness of a web-based intervention (RESTORE) to support self-management of fatigue for people with a BT and identify recommended modifications. Methods: Semi-structured interviews were conducted with people with BT, their caregivers and healthcare professionals (HCPs) who treat them. Interviews explored the appropriateness of RESTORE for this population, and suggested modifications to improve relevance and suitability. Interviews were transcribed and analysed thematically using interpretive description to devise recommendations. Results: Forty participants were interviewed (24 people with BT, 5 caregivers, 11 HCPs). Four themes were identified: feedback on content; feedback on format; feedback on use; and, barriers to engagement. These themes were linked by an overarching need for flexible and responsive tailoring to the unique needs of people with BT. Thirty-two recommended modifications were derived from feedback to optimise RESTORE for this population. Conclusion: Results suggest a BT-specific version of RESTORE would be acceptable to address fatigue in this population. Recommended adaptations include greater flexibility and tailoring of content and format for effective use among people with BT. Barriers to engagement including digital access and literacy and awareness of the resource should be addressed in the implementation of a BT-specific version of RESTORE.
Cancer-related fatigue, Co-design, Online intervention, Primary brain tumour, Qualitative research
0941-4355
Campbell, R.
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Shaw, J. M.
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Banks, H.
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Carlick, T.
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Faris, M. M.
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Jeon, M. S.
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Legge, D.
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Foster, C.
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Leonard, R.
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Chan, R. J.
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Agar, M. R.
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Miller, A.
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Dhillon, H. M.
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McDougall, Emma
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Buster, Jessica
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Vitangcol, Kathryn
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Virtue-Griffiths, Sian
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Lyne, Melinda
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Fazon, Tiffany
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Chen, Jill
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Lion, Katarzyna
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Milley, Kristi
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Rhee, Joel
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Sansom-Daly, Ursula
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Rankin, Nicole
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Pike, Kerryn
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Ownsworth, Tamara
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Nowak, Anna
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Koh, Eng Siew
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Kelly, Brian
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Haydon, Helen
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Halkett, Georgia
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Blackler, Thea
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the BRAINS Investigator Group
Campbell, R.
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Shaw, J. M.
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Banks, H.
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Carlick, T.
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Faris, M. M.
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Jeon, M. S.
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Legge, D.
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Foster, C.
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Leonard, R.
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Chan, R. J.
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Agar, M. R.
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Miller, A.
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Dhillon, H. M.
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McDougall, Emma
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Buster, Jessica
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Vitangcol, Kathryn
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Virtue-Griffiths, Sian
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Lyne, Melinda
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Fazon, Tiffany
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Chen, Jill
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Lion, Katarzyna
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Milley, Kristi
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Rhee, Joel
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Sansom-Daly, Ursula
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Rankin, Nicole
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Pike, Kerryn
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Ownsworth, Tamara
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Nowak, Anna
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Koh, Eng Siew
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Kelly, Brian
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Haydon, Helen
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Halkett, Georgia
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Blackler, Thea
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the BRAINS Investigator Group (2025) Co-designing a web-based intervention (RESTORE) to support self-management of cancer-related fatigue in people living with a brain tumour. Supportive Care in Cancer, 33 (5), [426]. (doi:10.1007/s00520-025-09471-0).

Record type: Article

Abstract

Purpose: Cancer-related fatigue (CRF) is a debilitating symptom commonly reported by people with a brain tumour (BT). Many interventions have been developed to reduce CRF; however, few have been evaluated in people with BT despite the unique functional deficits experienced by this population. We aimed to explore the appropriateness of a web-based intervention (RESTORE) to support self-management of fatigue for people with a BT and identify recommended modifications. Methods: Semi-structured interviews were conducted with people with BT, their caregivers and healthcare professionals (HCPs) who treat them. Interviews explored the appropriateness of RESTORE for this population, and suggested modifications to improve relevance and suitability. Interviews were transcribed and analysed thematically using interpretive description to devise recommendations. Results: Forty participants were interviewed (24 people with BT, 5 caregivers, 11 HCPs). Four themes were identified: feedback on content; feedback on format; feedback on use; and, barriers to engagement. These themes were linked by an overarching need for flexible and responsive tailoring to the unique needs of people with BT. Thirty-two recommended modifications were derived from feedback to optimise RESTORE for this population. Conclusion: Results suggest a BT-specific version of RESTORE would be acceptable to address fatigue in this population. Recommended adaptations include greater flexibility and tailoring of content and format for effective use among people with BT. Barriers to engagement including digital access and literacy and awareness of the resource should be addressed in the implementation of a BT-specific version of RESTORE.

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Accepted/In Press date: 15 April 2025
Published date: 28 April 2025
Additional Information: Publisher Copyright: © The Author(s) 2025.
Keywords: Cancer-related fatigue, Co-design, Online intervention, Primary brain tumour, Qualitative research

Identifiers

Local EPrints ID: 502306
URI: http://eprints.soton.ac.uk/id/eprint/502306
ISSN: 0941-4355
PURE UUID: 2ca0f72f-f9c2-4c7e-8a38-6953b086cef4
ORCID for C. Foster: ORCID iD orcid.org/0000-0002-4703-8378

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Date deposited: 20 Jun 2025 16:58
Last modified: 22 Aug 2025 01:53

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Contributors

Author: R. Campbell
Author: J. M. Shaw
Author: H. Banks
Author: T. Carlick
Author: M. M. Faris
Author: M. S. Jeon
Author: D. Legge
Author: C. Foster ORCID iD
Author: R. Leonard
Author: R. J. Chan
Author: M. R. Agar
Author: A. Miller
Author: H. M. Dhillon
Author: Emma McDougall
Author: Jessica Buster
Author: Kathryn Vitangcol
Author: Sian Virtue-Griffiths
Author: Melinda Lyne
Author: Tiffany Fazon
Author: Jill Chen
Author: Katarzyna Lion
Author: Kristi Milley
Author: Joel Rhee
Author: Ursula Sansom-Daly
Author: Nicole Rankin
Author: Kerryn Pike
Author: Tamara Ownsworth
Author: Anna Nowak
Author: Eng Siew Koh
Author: Brian Kelly
Author: Helen Haydon
Author: Georgia Halkett
Author: Thea Blackler
Corporate Author: the BRAINS Investigator Group

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