Patient-centered development of Embrace Pain: an online acceptance and commitment therapy intervention for cancer survivors with chronic painful chemotherapy-induced peripheral neuropathy

Authors

  • Daniëlle L. van de Graaf a Department of Medical and Clinical Psychology, CoRPS – Center of Research on Psychological Disorders and Somatic Diseases, Tilburg University, Tilburg, the Netherlands; b Department of Research, Netherlands Comprehensive Cancer Organisation (IKNL), Utrecht, the Netherlands
  • Tom Smeets a Department of Medical and Clinical Psychology, CoRPS – Center of Research on Psychological Disorders and Somatic Diseases, Tilburg University, Tilburg, the Netherlands
  • Marije L. van der Lee a Department of Medical and Clinical Psychology, CoRPS – Center of Research on Psychological Disorders and Somatic Diseases, Tilburg University, Tilburg, the Netherlands;c Centre for Psycho-Oncology, Scientific Research Department, Helen Dowling Institute, Bilthoven, the Netherlands
  • Hester R. Trompetter a Department of Medical and Clinical Psychology, CoRPS – Center of Research on Psychological Disorders and Somatic Diseases, Tilburg University, Tilburg, the Netherlands
  • Aafke Baars-Seebregts a Department of Medical and Clinical Psychology, CoRPS – Center of Research on Psychological Disorders and Somatic Diseases, Tilburg University, Tilburg, the Netherlands
  • Elin Børøsund d Department of Digital Health Research, Division of Medicine, Oslo University Hospital, Oslo, Norway; e Faculty of Health and Social Sciences, University of South-Eastern Norway, Drammen, Norway
  • Lise Solberg Nes d Department of Digital Health Research, Division of Medicine, Oslo University Hospital, Oslo, Norway; f Department of Psychiatry and Psychology, College of Medicine and Science, Mayo Clinic, Rochester, MN, USA; g Faculty of Medicine, Institute of Clinical Medicine, University of Oslo, Oslo, Norway
  • Karlein M. G. Schreurs h Department of Psychology, Health & Technology, Centre for eHealth & Well-Being Research, University of Twente, Enschede, the Netherlands
  • Floortje Mols a Department of Medical and Clinical Psychology, CoRPS – Center of Research on Psychological Disorders and Somatic Diseases, Tilburg University, Tilburg, the Netherlands; b Department of Research, Netherlands Comprehensive Cancer Organisation (IKNL), Utrecht, the Netherlands

DOI:

https://doi.org/10.1080/0284186X.2023.2187260

Keywords:

chemotherapy-induced peripheral neuropathy, cancer survivors, acceptance and commitment therapy, eHealth, online, PROFILES registry

Abstract

Background

Around 30% of cancer survivors suffer from chemotherapy-induced peripheral neuropathy (CIPN) ≥6 months after completion of chemotherapy, which comes with limitations in daily functioning and worsened quality of life(QoL). Treatment options are scarce. Our aim was to develop an online self-help intervention based on Acceptance and Commitment Therapy (ACT) to reduce pain interference in cancer survivors experiencing painful chronic CIPN.

Material and methods

This article applied a patient-centered design process using the Center for eHealth Research (CeHRes) roadmap. User needs were examined using online semi-structured interviews with patients and experts (N = 23). Interviews were transcribed verbatim and analyzed using thematic analysis. Personas were created based on interviews. Intervention content was based on identified user needs and ACT. Content and design were finalized using low-fidelity prototype testing (N = 5), and high-fidelity prototype testing (N = 7).

Results

Patients appreciated and agreed with the elements of ACT, had varying guidance needs, and wanted to have autonomy (e.g., moment and duration of use). Additionally, it was important to be aware that patients have had a life-threatening disease which directly relates to the symptoms they experience. Patients reported to prefer a user-friendly and accessible intervention. Similar points also emerged in the expert interviews. The final intervention, named Embrace Pain, includes six sessions. Session content is based on psychoeducation and all ACT processes. Further interpretation of the intervention (such as quotes, guidance, and multimedia choices) is based on the interviews.

Conclusion

This development demonstrated how a patient-centered design process from a theoretical framework can be applied. Theory-driven content was used as the basis of the intervention. Findings show an online ACT intervention designed for cancer survivors with painful chronic CIPN.

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Published

2023-07-03

How to Cite

L. van de Graaf, D., Smeets, T., L. van der Lee, M., Trompetter, H. R., Baars-Seebregts, A., Børøsund, E., … Mols, F. (2023). Patient-centered development of Embrace Pain: an online acceptance and commitment therapy intervention for cancer survivors with chronic painful chemotherapy-induced peripheral neuropathy. Acta Oncologica, 62(7), 676–688. https://doi.org/10.1080/0284186X.2023.2187260