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

R. Campbell; J. M. Shaw; H. Banks; T. Carlick; M. M. Faris; M. S. Jeon; D. Legge; C. Foster; R. Leonard; R. J. Chan; M. R. Agar; A. Miller; H. M. Dhillon; the BRAINS Investigator Group; Eng Siew Koh

doi:10.1007/s00520-025-09471-0

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

R. Campbell, J. M. Shaw, H. Banks, T. Carlick, M. M. Faris, M. S. Jeon, D. Legge, C. Foster, R. Leonard, R. J. Chan, M. R. Agar, A. Miller, H. M. Dhillon, the BRAINS Investigator Group, Eng Siew Koh

Research output: Contribution to journal › Article › peer-review

13 Downloads (Pure)

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.

Original language	English
Article number	426
Number of pages	14
Journal	Supportive Care in Cancer
Volume	33
Issue number	5
DOIs	https://doi.org/10.1007/s00520-025-09471-0
Publication status	Published - May 2025

Keywords

Cancer-related fatigue
Co-design
Online intervention
Primary brain tumour
Qualitative research

UN SDGs

This output contributes to the following UN Sustainable Development Goals (SDGs)

Access to Document

10.1007/s00520-025-09471-0Licence: CC BY

Final published versionFinal published version, 737 KBLicence: CC BY

Cite this

Campbell, R., Shaw, J. M., Banks, H., Carlick, T., Faris, M. M., Jeon, M. S., Legge, D., Foster, C., Leonard, R., Chan, R. J., Agar, M. R., Miller, A., Dhillon, H. M., the BRAINS Investigator Group, & Koh, E. S. (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), Article 426. https://doi.org/10.1007/s00520-025-09471-0

@article{5434250d7d2740d29a978a72c7854e36,

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

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.",

keywords = "Cancer-related fatigue, Co-design, Online intervention, Primary brain tumour, Qualitative research",

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

year = "2025",

month = may,

doi = "10.1007/s00520-025-09471-0",

language = "English",

volume = "33",

journal = "Supportive Care in Cancer",

issn = "0941-4355",

publisher = "SpringerLink",

number = "5",

}

Campbell, R, Shaw, JM, Banks, H, Carlick, T, Faris, MM, Jeon, MS, Legge, D, Foster, C, Leonard, R, Chan, RJ, Agar, MR, Miller, A, Dhillon, HM, the BRAINS Investigator Group & Koh, ES 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, vol. 33, no. 5, 426. https://doi.org/10.1007/s00520-025-09471-0

TY - JOUR

T1 - Co-designing a web-based intervention (RESTORE) to support self-management of cancer-related fatigue in people living with a brain tumour

AU - Campbell, R.

AU - Shaw, J. M.

AU - Banks, H.

AU - Carlick, T.

AU - Faris, M. M.

AU - Jeon, M. S.

AU - Legge, D.

AU - Foster, C.

AU - Leonard, R.

AU - Chan, R. J.

AU - Agar, M. R.

AU - Miller, A.

AU - Dhillon, H. M.

AU - the BRAINS Investigator Group

AU - McDougall, Emma

AU - Buster, Jessica

AU - Vitangcol, Kathryn

AU - Virtue-Griffiths, Sian

AU - Lyne, Melinda

AU - Fazon, Tiffany

AU - Chen, Jill

AU - Lion, Katarzyna

AU - Milley, Kristi

AU - Rhee, Joel

AU - Sansom-Daly, Ursula

AU - Rankin, Nicole

AU - Pike, Kerryn

AU - Ownsworth, Tamara

AU - Nowak, Anna

AU - Koh, Eng Siew

AU - Kelly, Brian

AU - Haydon, Helen

AU - Halkett, Georgia

AU - Blackler, Thea

PY - 2025/5

Y1 - 2025/5

N2 - 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.

AB - 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.

KW - Cancer-related fatigue

KW - Co-design

KW - Online intervention

KW - Primary brain tumour

KW - Qualitative research

UR - http://www.scopus.com/inward/record.url?scp=105004247350&partnerID=8YFLogxK

U2 - 10.1007/s00520-025-09471-0

DO - 10.1007/s00520-025-09471-0

M3 - Article

C2 - 40293503

AN - SCOPUS:105004247350

SN - 0941-4355

VL - 33

JO - Supportive Care in Cancer

JF - Supportive Care in Cancer

IS - 5

M1 - 426

ER -

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

Abstract

Keywords

UN SDGs

Access to Document

Other files and links

Fingerprint

Cite this