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Exploring Patients’ Understanding of Chemotherapy-Induced Peripheral Neuropathy

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Abstract

Little quantitative evidence exists surrounding patients’ level of understanding of chemotherapy-induced peripheral neuropathy (CIPN) symptoms (numbness, tingling, pain in the hands/feet) and consequences (e.g., negatively affect physical functioning or chemotherapy dosing) at the beginning of chemotherapy. The purpose of this cross-sectional, secondary analysis was to describe CIPN knowledge and education patterns among adults early in a course of neurotoxic chemotherapy for the treatment of cancer (< three infusions). Following consent, participants completed an electronic questionnaire about their perceptions of CIPN symptoms, incidence, and education. Participants (N = 92) were mainly female (76%), white (91%), and diagnosed with breast (46%) or gastrointestinal (40%) cancers. Most participants without CIPN (n = 48) did not expect to develop CIPN (45%) or were unaware of CIPN as a side-effect (30%). Furthermore, 71% of participants without CIPN (n = 31) estimated CIPN to occur in ≤ 30% of patients receiving neurotoxic chemotherapy. Overall, participants learned about CIPN from their doctor or nurse prior to beginning chemotherapy (90%). Clinicians delivered education about CIPN symptoms (75%), but less frequently delivered education about CIPN management (14%), or the impact of CIPN on the ability to continue chemotherapy (16%) or physical functioning (24%). Finally, participants reported that a discussion with their doctor/nurse would be the best way to learn about CIPN (92%). Results revealed that participants without CIPN were largely unaware of the adverse consequences or incidence of CIPN during treatment. Further research is needed to investigate optimal methods to promote patient-clinician communication about CIPN during chemotherapy to enhance patients’ retention of CIPN information and activation in their care.

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Data Availability

The datasets used and/or analyzed during the current study are available from the corresponding author on reasonable request.

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Funding

The funding for research expenses was provided by the Rita and Alex Hillman Foundation.

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Authors and Affiliations

Authors

Contributions

RK: conceptualization, methodology, formal analysis, investigation, writing — original draft, funding acquisition; DB: conceptualization, methodology, writing — review and editing; JM: conceptualization, writing — review and editing; KR: conceptualization, writing — review and editing; ES: conceptualization, writing — review and editing; JG: conceptualization, methodology, writing — review and editing, supervision.

Corresponding author

Correspondence to Robert Knoerl.

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Ethics Approval

Approval was obtained from the Dana-Farber Cancer Institute Office of Human Research Studies (19–535). The procedures used in this study adhere to the tenets of the Declaration of Helsinki.

Consent to Participate

Informed consent was obtained from all individual participants included in the study.

Consent for Publication

Not applicable.

Competing Interests

RK has received personal fees (consulting) from Strategy Inc., Spark Healthcare, and the Comprehensive and Integrative Medicine Institute and serves on the scientific advisory board of Wellium. JM has served as an advisor/consultant to Merck Pharmaceutical and COTA Healthcare. JG has received grant funding from the National Institutes of Health, compensation for grant reviews from the US Department of Defense, and consulting income from Algo Therapeutix, Asahi Kasei Pharma, Eikonizo Therapeutics, GW Pharma, Magnolia Neurosciences, Orthogonal Neurosciences, Science Branding Communications, SK Life Science, and Saluda Medical.

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Knoerl, R., Berry, D.L., Meyerhardt, J. et al. Exploring Patients’ Understanding of Chemotherapy-Induced Peripheral Neuropathy. J Canc Educ 38, 906–912 (2023). https://doi.org/10.1007/s13187-022-02206-3

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