Background & Aims

Pain, impaired functioning, and reduced quality of life are common consequences of childhood cancer survival. A diagnosis of cancer can shift the mindsets held about one’s own body which can exacerbate pain (1). Mindsets about the body are amenable offering a novel intervention target for pain management (2). Coming into hospital post-treatment acts as a reminder of the tough cancer experience. Digital interventions can provide patient care from the comfort of their own homes.

Our aim was to use co-design to understand the shift in the relationship with the body and identify unmet needs post-treatment in cancer survivors to inform the development of a digital support tool. This study describes the co-design process of the development of a digital intervention, EMBody (Exploring Mindsets about the Body), that aims to instil adaptive mindsets about the body and cancer to improve physical and psychological functioning, including pain, in survivors of childhood cancer (ages 16-25).

Methods

Six racially and socially diverse childhood cancer survivors with varied experiences of post-cancer pain were partnered with for the co-design process. Co-design partners were aged 17-33 (4 female; 3 White, 2 Black, 1 Nepalese-British) with varied cancer history (lymphoma, leukaemia, sarcoma, nasopharyngeal and thyroid cancer) and were recruited widely across the United Kingdom to capture social diversity. Partners met with the research team over 12-months, 3-7 times virtually at first, and once in-person later for a filmed interview. Co-design partners gave between 7.5-12 hours and were provided with a £30 Amazon Voucher per hour of their time. Two paediatric oncologist clinician partners were also consulted. Common post-treatment fears, pain experiences, and body mindsets were captured via interview and discussion, informing the intervention content.

Results

Using the co-design interview content, three digital modules containing six films and paired reflection exercises were created. Module 1 introduces patients to mindsets that survivors may have about their own bodies and alternative ways of thinking about the bodies’ capabilities. A meta-mindset approach teaches patients about the psychology of mindsets and provides strategies to adopt useful mindsets. Module 2 describes how survivors have maintained adaptive mindsets during challenges and setbacks such as pain and fear of recurrence. Clinicians normalise fears and offer recommendations for how to use mindsets to cope with everyday fears and to appropriately seek clinical support. Module 3 introduces how cancer can provide opportunities (a deeper appreciation for life, reconnect with the body) and the idea that developing the skill of mindsets can serve survivors well for the future as bodily changes and challenges arise.

Conclusions

Digital interventions for pain management require the involvement of diverse co-design partners with lived experience and clinical insights to deliver appropriate and relevant support. The novel EMBody digital therapeutic approach targeting mindsets about the body and cancer could support adolescent and young adult survivors with pain and wellbeing. A pilot trial to examine the preliminary efficacy of the EMBody intervention is underway.

References

(1)Dowling, E. J., Simons, L. E., Crum, A. J., Spunt, S. L., Simon, P., Webster, S. N., … & Heathcote, L. C. (2023). Body mindsets are associated with pain and threat-related risk factors for pain in survivors of childhood cancer. The Journal of Pain.
(2)Zion, S. R., Schapira, L., Berek, J. S., Spiegel, D., Dweck, C. S., & Crum, A. J. (2023). Changing cancer mindsets: A randomized controlled feasibility and efficacy trial. Psycho?Oncology, 32(9), 1433-1442.
(3)Heathcote, L. C., & Eccleston, C. (2017). Pain and cancer survival: a cognitive-affective model of symptom appraisal and the uncertain threat of disease recurrence. Pain, 158(7), 1187-1191.

Presenting Author

Emily Jayne Dowling

Poster Authors

Emily Dowling

BSc, MSc, Current PhD student

King's College London

Lead Author

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Claudia Knowles

King's College London

Lead Author

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Dr Matthew Brown

The Royal Marsden

Lead Author

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Emma Thistlewayte

The Royal Marsden

Lead Author

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Dr Alia Crum

Stanford University

Lead Author

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Topics

  • Patient Engagement and Co-Creation in Research and Education