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Patient perceptions of altering chemotherapy treatment due to peripheral neuropathy

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Abstract

Purpose

Clinical practice guidelines recommend altering neurotoxic chemotherapy treatment in patients experiencing intolerable chemotherapy-induced peripheral neuropathy (CIPN). The primary objective of this survey was to understand patient’s perspectives on altering neurotoxic chemotherapy treatment, including their perceptions of the benefits of preventing irreversible CIPN and the risks of reducing treatment efficacy.

Methods

A cross-sectional online survey was distributed via social networks to patients who were currently receiving or had previously received neurotoxic chemotherapy for cancer. Survey results were analyzed using descriptive statistics and qualitative analysis.

Results

Following data cleaning, 447 participants were included in the analysis. The median age was 57 years, 93% were white, and most were from the UK (53%) or USA (38%). Most participants who were currently or recently treated expected some CIPN symptom resolution (86%), but 45% of those who had completed treatment more than a year ago reported experiencing no symptom resolution. Participants reported that they would discontinue chemotherapy treatment for less severe CIPN if they knew their symptoms would be permanent than if symptoms would disappear after treatment. Most patients stated that the decision to alter chemotherapy or not was usually made collaboratively between the patient and their treating clinician (61%). The most common reason participants were reluctant to talk with their clinician about CIPN was fear that treatment would be altered. Participants noted a need for improved understanding of CIPN symptoms and their permanence, better patient education relating to CIPN prior to and after treatment, and greater clinician understanding and empathy around CIPN.

Conclusions

This survey highlights the importance of shared decision-making, including a consideration of both the long-term benefits and risks of altering neurotoxic chemotherapy treatment due to CIPN. Additional work is needed to develop decision aids and other communication tools that can be used to improve shared decision making and help patients with cancer achieve their treatment goals.

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Data Availability

Survey data is available upon reasonable request to the corresponding author.

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Acknowledgements

We would like to thank all survey respondents and organizations who helped with survey distribution, including Bowel Cancer UK and Myeloma UK. P.A. is supported by Bicocca Starting Grant (University of Milano-Bicocca).

Author information

Authors and Affiliations

  1. Department of Clinical Pharmacy, University of Michigan College of Pharmacy, Room 2560C, Ann Arbor, MI, 48109-1065, USA

    Daniel L Hertz

  2. Department of Nursing, Mayo Clinic, Jacksonville, FL, USA

    Cindy Tofthagen & Katharine E. Sheffield

  3. Bicocca Bioinformatics Biostatistics and Bioimaging Center – B4, School of Medicine and Surgery, University of Milano-Bicocca, Monza, Italy

    Emanuela Rossi & Davide Paolo Bernasconi

  4. School of Medicine, Jeonbuk National University, Jeonju, Korea

    Jiyoon Lim

  5. No Affiliation, Independent Patient Advocate, Brookfield, IL, USA

    Martha Carlson

  6. Department of Medicine, Brigham and Women’s Hospital, Harvard Medical School, Boston, MA, USA

    Larissa Nekhlyudov

  7. Medicine Monash Health, School of Clinical Sciences, Faculty of Medicine, Nursing and Health Sciences, Monash University, Clayton, Australia

    Lisa Grech

  8. Center for Healthy Aging, Self-management and Complex Care, College of Nursing, The Ohio State University, Columbus, OH, USA

    Diane Von Ah

  9. Lawrence S. Bloomberg Faculty of Nursing, University of Toronto, Toronto, Ontario, Canada

    Samantha J Mayo

  10. Princess Margaret Cancer Centre, University Health Network, Toronto, Ontario, Canada

    Samantha J Mayo

  11. Department of Oncology, Mayo Clinic, Rochester, MN, USA

    Kathryn J. Ruddy

  12. Department of Clinical Pharmacy Practice, University of California Irvine School of Pharmacy & Pharmaceutical Sciences, Irvine, CA, USA

    Alexandre Chan

  13. School of Medicine and Surgery, University of Milano-Bicocca, Monza, Italy; Fondazione IRCCS San Gerardo dei Tintori, Monza, Italy

    Paola Alberti

  14. Yale Cancer Center, New Haven, CT, USA

    Maryam B Lustberg

  15. Florence Nightingale Faculty of Nursing, Midwifery and Palliative Care, King’s College London, London, UK

    Mary Tanay

Authors
  1. Daniel L Hertz
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  2. Cindy Tofthagen
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  3. Emanuela Rossi
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  4. Davide Paolo Bernasconi
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  5. Jiyoon Lim
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  6. Martha Carlson
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  7. Katharine E. Sheffield
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  8. Larissa Nekhlyudov
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  9. Lisa Grech
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  10. Diane Von Ah
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  11. Samantha J Mayo
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  12. Kathryn J. Ruddy
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  13. Alexandre Chan
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  14. Paola Alberti
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  15. Maryam B Lustberg
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  16. Mary Tanay
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Contributions

D.H, C.T., M.L, M.T. conceptualized the project and survey. M.C., K.S., L.N., L.G., D.V.A., S.M., K.R., A.C. helped with survey development and testing. E.R., D.B., and J.L. analyzed the data. D.H. wrote the main manuscript text and created the figures. All authors reviewed the manuscript and provided critical feedback.

Corresponding author

Correspondence to Daniel L Hertz.

Ethics declarations

Ethics approval

This survey was approved by the Institutional Review Board of King’s College London (MRA-20/21-22971) and conducted in accordance with the Declaration of Helsinki.

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Individuals consented to participate in the study within their responses to a dedicated survey question. No individual participant health information was published.

Competing interests

The authors declare no competing interests.

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Supplementary information

ESM 1

Supplementary Table 1 Free Text Comments about CIPN (DOCX 17 kb)

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Hertz, D.L., Tofthagen, C., Rossi, E. et al. Patient perceptions of altering chemotherapy treatment due to peripheral neuropathy. Support Care Cancer 32, 48 (2024). https://doi.org/10.1007/s00520-023-08209-0

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