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. 2025 Apr 1;29(2):113–118. doi: 10.1188/25.CJON.113-118

Optimizing Assessment of and Education About Chemotherapy-Induced Peripheral Neuropathy Among Breast Cancer Survivors

La-Urshalar Brock 1,✉, Katherine A Yeager 1, Ilana Graetz 1, Nicholas A Giordano 1
PMCID: PMC12056825  PMID: 40096567

Abstract

Breast cancer survivors often face numerous challenges during and after treatment, including chemotherapy-induced peripheral neuropathy (CIPN) from neurotoxic antineoplastic treatments. Delayed or underreported CIPN may result in worsened symptoms. Several factors influence patient reporting of CIPN presentations to the oncology team, including health literacy, fear, and cultural beliefs.

AT A GLANCE

  • ■ CIPN varies in severity from mild to irreversible, occurs during or after chemotherapy, and lasts for weeks, months, or years.

  • ■ Assessing for comprehension and health literacy in patients with breast cancer before chemotherapy can help identify knowledge gaps about potential long-term side effects like CIPN.

  • ■ Implementing patient-reported outcome tools helps ensure breast cancer survivors are heard and symptoms are accurately captured, facilitating better communication and tailoring of symptom management strategies.

Keywords: breast cancer, chemotherapy-induced peripheral neuropathy, underreporting

One in eight women in the United States will be diagnosed with breast cancer in their lifetime. In 2025, it is estimated that there will be 316,950 new diagnoses of breast cancer (American Cancer Society, 2025), of which 2,800 will be diagnosed in men. With advances in treatment, the number of breast cancer survivors (BCSs) is steadily increasing. There are about four million BCSs in the United States (American Cancer Society, 2022, 2025). The longer BCSs live, the more long-term side effects of treatment become apparent (Engvall et al., 2022; Rivera et al., 2018). These lasting side effects can affect the quality of life of BCSs, as well as their physical, emotional, and psychological well-being.

Chemotherapy-induced peripheral neuropathy (CIPN) is a common short- and long-term side effect that can cause debilitating symptoms for BCSs. For BCSs, CIPN occurs when patients are treated with antineoplastic neurotoxic chemotherapies such as taxanes (e.g., docetaxel, paclitaxel), platinum agents (e.g., cisplatin, carboplatin), or vinca alkaloids (e.g., vinorelbine) (Ewertz et al., 2015; Hausheer et al., 2006). Most curative-intent chemotherapy regimens for patients with breast cancer include a type of taxane treatment (Miltenburg & Boogerd, 2014; Wang et al., 2021). Taxanes work on the microtubules by interfering with the depolymerization and repolymerization of a normal cycling of microtubules, which, in turn, alters cancer cell division and causes cell death (Bae et al., 2021; Miltenburg & Boogerd, 2014; Zajączkowska et al., 2019). Taxanes mostly affect small sensory fibers, resulting in paresthesia, dysesthesia, and loss of dexterity in the fingers and toes (Hertz et al., 2021; Miltenburg & Boogerd, 2014).

CIPN has a wide range of severity, varying from mild to irreversible, and can occur at any period of time during or after cessation of chemotherapy treatment. CIPN may last weeks, months, or years (Miltenburg & Boogerd, 2014). CIPN is usually described as a sensory neuropathy, but can also be autonomic and sometimes causes motor changes (Salgado, Quinn, et al., 2020). CIPN has been described as feeling like altered touch sensations of shooting pain, burning, pins and needles, cramps, electric pains, or tingling/numbness that is intermittent or constant in the fingers, hands, feet, and/or lower legs (Hausheer et al., 2006; Salgado, Liu, et al., 2020), and can be induced by differing temperatures. CIPN can cause unsteady balance or gait and can also cause difficulty holding items in the hands, grasping items, writing, or performing activities of daily living like driving or cooking (Engvall et al., 2022; Knoerl et al., 2022; Tanay & Armes, 2019). CIPN can also increase the chances of falls and injury (Bao et al., 2016). CIPN severity is usually predicted by the cumulative dose of the chemotherapy drug (Miltenburg & Boogerd, 2014). However, there are notable risk factors that can increase the chances of a patient with breast cancer experiencing CIPN (see Figure 1). CIPN symptoms are painful and inhibit functioning but because of the unique presentations relative to nociplastic pain presentations, it may be difficult for clinicians to assess and for patients to report.

FIGURE 1.

FIGURE 1

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RISK FACTORS FOR CHEMOTHERAPY-INDUCED PERIPHERAL NEUROPATHY

Note. Based on information from Hertz et al., 2021; Lavoie Smith et al., 2008; Timmins et al., 2023.

Discussing symptoms between patients and their clinicians is crucial because a lack of understanding about the importance of reporting CIPN symptoms can cause symptoms to persist and progress, negatively affecting quality of life for BCSs. Survivors may not fully comprehend the necessity of communicating their side effects, like CIPN, to their oncology team. Without proper education from clinicians, patients might assume that CIPN is an expected part of treatment, which may lead survivors to refrain from discussing issues with their oncology team. Notable risk factors, in addition to understanding of symptoms, health literacy, emotions, and beliefs, may influence patients’ willingness to disclose CIPN experiences. Timely reporting of CIPN symptoms can result in earlier interventions, such as chemotherapy dose modifications, medication changes, or additional supportive therapies, which could mitigate the severity of CIPN, promote informed decision-making, and, ultimately, improve overall quality of life.

CIPN Prevalence

It is estimated that 19%–85% of patients with cancer experience CIPN after exposure to antineoplastic chemotherapy drugs; however, the prevalence is drug dependent (Zajączkowska et al., 2019). Rivera et al. (2018) found that the prevalence of CIPN in postchemotherapy patients with breast cancer ranged from 11% to 80% at one to three years after diagnosis. The prevalence of CIPN has been difficult to estimate for patients with breast cancer because of inconsistencies and limitations of current methods used to assess CIPN, ranging from patient- to provider-reported CIPN, different assessment tools/surveys, a lack of diversity in participants, and timing of CIPN assessments (Hausheer et al., 2006; Molassiotis et al., 2019; Rivera et al., 2018; Tan et al., 2019).

Health Literacy and CIPN

Health literacy serves as a key factor in understanding the potential outcomes of chemotherapy and aiding patients in reporting symptoms, and is directly linked to the likelihood of patients reporting symptoms such as CIPN (Parker et al., 2018, 2020). Patients with breast cancer who have a lower health literacy require more information about their diagnosis and the chemotherapy they will receive, yet they often receive less education than their peers (Halbach et al., 2016). Patients with breast cancer may also have difficulty understanding the risks of CIPN (Knoerl et al., 2022; Tanay & Armes, 2019). Patients rely on their oncologists and oncology nurses for guidance and open communication (Sheppard et al., 2011; Suhail et al., 2023). In particular, nurses have a critical role in imparting breast cancer–related and treatment-related knowledge to their patients, including side effect management and the best methods of self-care during chemotherapy to minimize symptoms (Parker et al., 2018, 2021). Some of the most important considerations for nurses to take into account when relaying health-related information to their patients are patients’ health literacy levels and learning styles. Nurses can also supplement health-related knowledge via a variety of media, including printed materials and interactive computer tutorials. According to Parker et al. (2018, 2020), nurses who explain health-related issues in plain language (without using medical or scientific jargon) and use supplemental materials (with easily decipherable sentences and pictures) are most effective in conveying knowledge to their patients. Research indicates that the preponderance of patient education materials for cancer care are not comprehensible or patient centered, citing low health literacy among cancer survivors (Armache et al., 2024).

Lower health literacy, combined with the fact that oncology providers and pharmacists cannot always optimally educate patients about CIPN, can lead to patients having difficulty explaining or describing their CIPN symptoms to their oncologist, which can result in delayed disclosure or underreporting of CIPN (Knoerl et al., 2022). Nurses in oncology settings should assess patients who are at risk for CIPN for their understanding of CIPN and provide targeted education to individuals presenting with lower health literacy. Nurses can use a cancer health literacy tool, such as the 6-item or 30-item Cancer Health Literacy Test or the Leuven Questionnaire on Patient Knowledge of Chemotherapy, in their assessments (Coolbrandt et al., 2013; Moore & Hayes, 2023; Parker et al., 2020). By identifying patients with lower health literacy, nurses can tailor their communication strategies, use simplified language, offer additional resources (e.g., visual aids, follow-up consultations), and include family members or caregivers in the education process to ensure complete understanding of the treatment and potential side effects. Repeat assessments of patient understanding throughout the course of chemotherapy may also aid in addressing any emerging concerns and ensure that patients are empowered to make informed decisions about their care.

Patient-Reported Outcomes

One optimal method to assess CIPN in BCSs is by using patient-reported outcome (PRO) surveys (see Table 1). PRO surveys are a valuable tool for capturing symptom experience, management, and outcomes, aligning well with symptom management theory (Dodd et al., 2001; Li et al., 2022; Mathew et al., 2021). Symptom management theory emphasizes the importance of understanding and addressing patients’ subjective experiences of symptoms, which can positively affect their overall health and quality of life (Dodd et al., 2001; Mathew et al., 2021; Smith et al., 2023; Wang et al., 2021). PRO surveys have proven beneficial in offering additional insights into the prevalence and effects of CIPN (Ewertz et al., 2015; Wang et al., 2021). Regular use of PRO surveys can help track CIPN progression over time, providing valuable data for potential adjustments in treatment plans. Implementing PRO tools, whether nurse- or self-administered, ensures patients’ voices are heard and their symptoms are accurately captured, facilitating better communication and tailored management strategies (Hertz et al., 2021). In addition, there is limited comprehensive information on effectively communicating with patients with breast cancer about the potential long-term side effects of chemotherapy, like CIPN. Nurse-led research examining efforts to enhance communication to optimize patient-centered education about CIPN, as well as subsequent changes in symptom reporting and outcomes, is needed.

TABLE 1.

SELECTED VALIDATED CIPN PATIENT-REPORTED ASSESSMENT TOOLS

TOOL SUBSCALES NUMBER OF QUESTIONS TIME TO COMPLETE
CIPN Assessment Tool

  • ■ Symptom experience (e.g., occurrence, severity, distress, frequency)

  • ■ Physical performance (interference with activities of daily living)

 50 items 20–30 minutes
EORTC QLQ-CIPN20

  • ■ Sensory

  • ■ Motor

  • ■ Autonomic

 20 items

  • ■ Use in conjunction with EORTC QLQ Core 30

 10–15 minutes
FACT/Gynecologic Oncology Group–Neurotoxicity (version 4.0)

  • ■ Physical, social/family, emotional, and function well-being

  • ■ Neurotoxicity Subscale

 38 items

  • ■ Additional item number versions are available.

 10–15 minutes
FACT–Taxane (version 4.0)

  • ■ Physical, social/family, emotional, and function well-being

  • ■ Taxane Therapy Subscale

 43 items 10–15 minutes
Patient-Reported Outcomes CTCAE– numbness and tingling item

  • ■ Severity

  • ■ Interference

  • ■ Neurotoxicity-related question 39 includes 2 questions.

  • ■ Needs to be completed in addition to CTCAE

 5 minutes or less
Peripheral neuropathy scale

  • ■ Sensory

  • ■ Physical functioning

 19 items 10–20 minutes
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CIPN—chemotherapy-induced peripheral neuropathy; CTCAE—Common Terminology Criteria for Adverse Events; EORTC QLQ—European Organisation for Research and Treatment of Cancer Quality-of-Life Questionnaire; FACT—Functional Assessment of Cancer Therapy

Patient Education About CIPN

Prior to the initiation of chemotherapy, patients with breast cancer are often provided information individually by their oncologist, oncology nurse, and/or pharmacist, including verbal and written instructions (Lively et al., 2020; Suhail et al., 2023). Patients with breast cancer also frequently receive chemotherapy information from infusion nurses during their treatments (Parker et al., 2020). Patients can also gain valuable insights about what to anticipate and discover effective strategies for managing potential side effects by engaging in conversations with other patients. A study by Tanay et al. (2022) found that just days after the chemotherapy education was provided, most patients did not understand CIPN or that they should report CIPN symptoms to their oncology team. Similarly, Sheppard et al. (2011) found that after patients with breast cancer were provided information about their diagnosis, most had forgotten the details and did not fully understand their diagnosis. Oncology nurses can help patients with breast cancer understand CIPN and recommend additional information on chemotherapy side effects (Parker et al., 2020). Providing clear information in a gradual and consistently reinforced manner can cultivate trust between the oncology team and the patient, while also equipping patients with effective strategies to track and manage chemotherapy side effects such as CIPN.

Psychological Emotions Toward Chemotherapy and Factors Linked to CIPN

When side effects like CIPN occur and affect activities of daily living, some patients choose not to disclose symptoms and will often cope with their symptoms to continue chemotherapy because they fear discontinuing the treatment, reducing its effectiveness if altered, and being unable to maintain a sense of normalcy in their life (Cowley et al., 2000; Salgado, Quinn, et al., 2020; Sheppard et al., 2011). In Salgado, Quinn, et al. (2020), patients cited these reasons for delayed reporting of CIPN before they ultimately reported their CIPN symptoms. Salgado, Liu, et al. (2020) discovered that patients who underreported CIPN often had lower health literacy rates, had lower incomes, were unemployed, and exhibited higher confidence and trust in their oncologist. There are many reasons other than fear that might lead a patient with breast cancer to underreport CIPN, including being an older adult patient, having less social support, not having enough time during an office visit to discuss all of their concerns, mistrusting the physician or advanced practice provider, holding certain cultural beliefs such as perceiving symptoms as an unavoidable part of treatment, and not understanding the importance of reporting symptoms (Armache et al., 2024; Holden et al., 2021; Parker et al., 2020; Salgado, Quinn, et al., 2020; Tanay et al., 2017). These factors warrant additional exploration.

Understanding the complex dynamics of CIPN comprehension and reporting among BCSs is vital for ensuring effective communication, addressing treatment concerns, enhancing overall patient care, and improving quality of life. To enable shared decision-making in patient care and prompt side effect reporting, it is crucial for patients to understand their chemotherapy treatment and its potential short- and long-term side effects (Sheppard et al., 2011). Nurses are positioned within oncology settings to assess patients’ health literacy and understanding of CIPN, while also educating patients about essential concepts of CIPN presentations and supporting them in communicating their concerns with their clinical care team to guide symptom management.

Nursing Role With CIPN

Nurses have a pivotal role in the care continuum of patients with breast cancer, helping to enhance overall understanding of and guide throughout diagnosis, symptoms, treatment options, and potential side effects. Nurses screening for risk factors for CIPN, as well as assessing patient health literacy and emotional state, may be more likely to deliver targeted education about CIPN symptoms. Through office visit assessments, interactions via telephone calls or portal messages, and monitoring of results of PRO surveys, nurses can develop and deliver tailored learning plans. These plans may involve using various educational resources such as printed materials, online resources, videos, health mobile applications, or support groups (Knoerl et al., 2023). Nurses are instrumental in devising effective strategies for delivering information gradually and consistently, particularly focusing on explanation of CIPN symptoms, symptom management strategies, and potential effects on quality of life. By collaborating with other healthcare professionals, nurses can create easy-to-understand visual materials for individuals with various health literacy levels, address key topics (e.g., what CIPN is, CIPN-related treatment decisions), and lead educational sessions on potential risk factors. When nurses, patient advocates, advanced practice providers, pharmacists, and oncologists collaborate to provide tailored CIPN education to patients with breast cancer, particularly to those with lower health literacy, they can help foster patient confidence and improve patients’ ability to navigate long-term side effects, make informed decisions about their treatment, and manage their health during and after treatment.

Conclusion

BCSs experience a range of side effects caused by chemotherapy. CIPN can impair short- and long-term quality of life by causing numbness, tingling, and pain in the extremities. Evaluating patient health literacy before discussing chemotherapy treatment can help patients disclose symptoms as they occur, guiding treatment decisions, helping to mitigate these effects, and improving overall quality of life. Prioritizing health literacy in oncology care by assessing patient understanding and tailoring communication and educational strategies to the needs of a patient with breast cancer helps to improve patient comprehension, enhance treatment outcomes, and lead to improved patient well-being and a more effective medical experience. Nurses can explain complex oncology information in terms that patients can understand, fostering more informed and engaged patients with breast cancer who are better equipped to manage chemotherapy side effects, participate in shared decision-making, and achieve better health outcomes.

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Supportive Care provides readers with information on symptom management and palliative care issues. If you are interested in writing for this department, contact Associate Editor Denise Weiss, PhD, FNP, BC, AOCNP®, at weissd@karmanos.org.

Footnotes

The authors take full responsibility for this content and did not receive honoraria or disclose any relevant financial relationships.

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