Background: Chemotherapy-induced peripheral neuropathy (CIPN) is an underaddressed and distressing common side effect of cancer treatment. Effective management of CIPN merits a comprehensive team approach. Nurse navigators are in a unique position to provide education and support to people with CIPN and to advocate for treatment options.
Objectives: To report on our experience in development and patient feedback of a CIPN clinical pathway with embedded patient education. We also report on the role of the nurse navigator in developing and implementing this project.
Methods: We reviewed patient-reported outcome data to identify the incidence of CIPN in our gynecologic oncology patient population and developed a clinical pathway for management of CIPN. We also developed CIPN patient education materials and developed a process to deliver them to patients. We surveyed patients about their experience with CIPN and their satisfaction with their CIPN-related education.
Results: Ten patients completed the satisfaction survey on CIPN education. Eight of 10 patients (80%) answered “Agree” or “Strongly agree” that the education was given in a timely manner. Eight of 10 patients (80%) answered that the education was easy to understand.
Conclusion: Earlier identification of symptoms and awareness of resources, such as utilization of the CIPN pathway, can provide relief for people with CIPN and can minimize the effects of CIPN, leading to improved quality of life. The nurse navigator is uniquely positioned to impact the patient experience of CIPN. Next steps include evaluation of provider use of the pathway and continued tracking of patient-reported outcomes.
Chemotherapy-induced peripheral neuropathy (CIPN) is an underaddressed and undermanaged common side effect of cancer treatment that lacks a comprehensive team approach to management.1-3 Nurse navigators can address and improve this side effect. CIPN is a serious clinical issue that can be caused by a significant number of neurotoxic chemotherapeutic agents, including taxanes, platinums, vinca alkaloids, and bortezomib, among certain patients.1-3 Sensory nerves are affected first, and CIPN symptoms often start with painful sensations or numbness in extremities. Sensory, motor, and autonomic dysfunction may occur depending on the severity of neuronal damage and the types of nerves affected.1,2 Individuals often describe CIPN as burning and shooting pain, numbness, and paresthesia, but pain is not always present.2 Providers often dose reduce or stop treatment when CIPN becomes severe, risking impact on survival. Although CIPN resolves for most patients after cancer treatment ends, others are affected for a year or more after treatment stops.4,5 Neurotoxicity is a common side effect of cancer treatment, affecting over two-thirds of patients.4,5
CIPN risk and severity increase with higher doses and longer exposure to neurotoxic regimens.6 People with advanced cancers and those undergoing prolonged treatment regimens are at particular risk. In addition to physical symptoms, CIPN frequently affects mobility, activities of daily living, sleep, and mood.2,6 The most recent clinical practice guidelines from ASCO in 2020 had no recommendations for preventing CIPN and noted only 1 medication, duloxetine, with evidence to support its use in reducing neuropathic pain.5,7 There is little but growing evidence for early nonpharmacologic interventions, including Chinese herbal medicine, acupuncture, exercise, vitamin E and omega-3 polyunsaturated fatty acids supplementation, massage, and foot baths, although rigorous scientific evidence supporting their efficacy is limited.1,2,6 A systematic review and meta-analysis by Crichton et al is the strongest evidence for physical exercise as a safe and viable treatment for the prevention and management of CIPN in people with advanced cancer.6 Cryotherapy was also found to be associated with effectively alleviating CIPN in patients with breast cancer.8
Nurse navigators are in a unique position to provide education and support to people with CIPN, to advocate for both pharmacologic and nonpharmacologic treatment options, and to lead comprehensive, interdisciplinary team management of CIPN.8 It is important to note that culture and language can impact the articulation and interpretation of symptom characteristics.2 Since cancer and its treatment and side effects can affect every part of a person’s life, including physical, psychological, vocational, and interpersonal aspects, nurse navigators are able to influence the mitigation of side effects through assessment, education, and management.2 The effect of CIPN on function and quality of life warrants a comprehensive team approach to management. Nonetheless, little guidance is available to help clinical teams create that approach and structure management of CIPN in ways that increase patient satisfaction and improve quality of life. This project sought to develop a model to address best practices in management of CIPN and improving patient care.8
This project was initiated by an interdisciplinary gynecologic oncology team at a National Cancer Institute (NCI)-designated comprehensive cancer program working at 2 sites within a health system in an urban setting. One site was the main NCI center for the health system, and the second site was an urban community cancer program in the same system but in a different part of the same city. This team included surgeons, advanced practice providers, medical oncologists, nurse navigators, cancer rehabilitation specialists, and cancer service line administrators. The clinical team had noted a lack of information for both providers and patients regarding CIPN. At the time, the team did not have a standardized treatment pathway or guideline for providers. Patient education on CIPN was mainly discussed at the visit with medical oncology. Printed patient education on CIPN was not provided. The team worked with an internal clinical pathway program team to develop and publish an evidence-based clinical pathway for use across the health system. They also developed patient education materials in various formats to align with our diverse patient population’s learning needs. A patient survey was completed to assess satisfaction with the patient education materials (Table 1 and Table 2), and a provider survey is planned to assess provider usage and satisfaction. This project was submitted to the institutional review board at the University of Pennsylvania and approved as an exempt quality improvement project.
To determine the incidence of CIPN in our gynecologic oncology population, we reviewed our patient-reported outcomes (PROs) data over 4 years (Table 3). Although more than half of the patients (189 of 313) reported no CIPN symptoms, 14.1% reported moderate symptoms, 3.5% reported severe symptoms, and 1.1% reported very severe symptoms (Table 4). The clinical team noted a lack of information for both providers and patients regarding CIPN in both the electronic health record and the existing patient education materials. Although the medical oncology providers reviewed the side effects of CIPN at the initial visit, patients were often overwhelmed with information. A plan was developed to have the nurse navigator contact new patients to reinforce and review the newly developed CIPN patient education after the first cycle of chemotherapy.
In addition to patient education, a clinical pathway team developed and published an evidence-based clinical pathway. Patient education materials were also developed in a variety of formats to align with the learning needs of the diverse patient population. These formats included written materials, algorithms, and charts for patients to follow steps in identifying CIPN and treatment options, as well as in-person or telephone education sessions with the nurse navigator.
The clinical team recognized the need to standardize clinical management and patient education in CIPN for people being treated for gynecological malignancies. A clinical pathway was developed working with medical oncology, gynecologic oncology, and physical medicine and rehabilitation colleagues. (Figure 1) This pathway was developed with the assistance of the Penn Center for Evidence-Based Practice using a literature review of peer-reviewed journal articles and systematic reviews. The pathway was created in an algorithmic format used by the Penn Pathways program and accessible to Penn Medicine staff on the intranet site. In addition, the pathway was presented to the gynecologic oncology providers and staff in meetings to familiarize them with its use.
A patient education resource sheet was developed by the nurse navigator and gynecologic oncology surgery nurses using existing resources from the American Cancer Society, National Institutes of Health, and OncoLink.
A patient education resource sheet was developed by the nurse navigator and gynecologic oncology surgery nurses using existing resources from the American Cancer Society (ACS), National Institutes of Health (NIH), and Onco-Link. These resources were evaluated for highest level of evidence for reading level and ease of use. The resource sheet included hyperlinks to ACS, NIH, and OncoLink information by topic (for example, what is CIPN?, managing peripheral neuropathy, how to avoid injury, examples of nonmedical treatments for pain, and contact information for physical therapy and physical medicine and rehab departments). Figure 2 shows the process of using the resource sheet and the nurse navigator’s role in providing education to patients. The goal was to improve patient awareness of CIPN for earlier identification, including how to recognize the signs and symptoms and when to notify the provider.
To identify if the patient education materials met the needs of our patients, a survey was developed. The patients who agreed to take part in a patient satisfaction survey could choose either an anonymous survey link or a telephone conversation with their navigator. The survey included 6 Likert scale questions with an additional free text question to provide feedback for improving the education content and delivery. Patient satisfaction was measured using descriptive statistics (n, %) for each Likert scale question.
The nurse navigator–led clinical response after CIPN symptom onset is illustrated in Figure 3. After assessing the severity of symptoms and any current treatments that have been initiated, the nurse navigator refers to the clinical pathway (Figure 1) and recommends appropriate interventions in collaboration with the provider. The nurse navigator also facilitates referrals to appropriate care teams, such as physical therapy, palliative care, pain management, neurology, social work, and physical medicine/rehabilitation. This process was developed by the interdisciplinary team of medical oncology, gynecologic oncology, and rehabilitation medicine.
The PRO data span from December 2018 through November 2022. Demographic information is reported in Table 3. The sample included 1042 CIPN severity outcome responses collected from 313 unique patients. The responses were collected either through the patient online portal (n=750, 71.98%) or a provided electronic tablet device (n=292, 28.02%). Patients ranged in age from 26 to 88 years (mean=60). All patients were female. The unique patient diagnosis categories included uterine cancer (n=166, 53%), ovarian (n=72, 23%), cervical (n=41, 13.1%), other (n=17, 5.4%), and vulva (n=17, 5.4%). The self-assessed severity of CIPN spanned from 1 (none) to 5 (very severe) (Table 4). Of the total responses, half did not report signs or symptoms of CIPN (n=525, 50.3%); mild symptoms were reported in 30.8% of responses (n=321), moderate in 14.1% (n=147), severe in 3.5% (n=37), and very severe in 1.1% (n=12). Those who reported severe or very severe symptoms included 33 unique patients. Forty-nine responses from these 33 unique patients indicated severe or very severe numbness and tingling. Five of these individual patients are included in the unique patient count for severe and very severe, as their reported severity changed over time. The distribution of severity scores is reported in Table 4.
After reviewing the historical PRO data, we focused on new patients who were currently undergoing or about to start treatment to collect real-time response data. The nurse navigator was notified by the clinical team when there was a new patient visit. She then reached out to review CIPN signs and symptoms with the patient. To assess this educational intervention, a survey was developed. The patient survey was administered either through an anonymous survey link or by telephone by the nurse navigator over 2 months. Fourteen patients were surveyed, and 10 responded. The survey included 6 Likert scale questions and an additional free text question to provide feedback for improving the education content and delivery. Patient satisfaction was measured using descriptive statistics (n, %) for each Likert scale question. Ten patients completed the survey. Eight of 10 patients (80%) answered “Agree” or “Strongly agree” that the education was given in a timely manner. Eight of 10 patients (80%) answered that the education was easy to understand. Seven patients completed the survey through the portal, and 3 surveys were completed over the phone by the nurse navigator due to lack of patient IT resources. Of the responses received from the patients who completed the education through the portal, all were strongly in favor of the education being sent through the online patient portal (n=7, 100%). All respondents agreed or strongly agreed that they were aware of the signs and symptoms of CIPN (n=10, 100%). Ninety percent of patients agreed or strongly agreed that they knew when to contact the medical team regarding CIPN (n=9, 90%). Five patient comments were received that included appreciation of printout education, feeling overwhelmed by education, and asking for more education about treatment and medications that cause CIPN (n=1, 20%). See Tables 1 and 2 for results. Future research plans include further evaluation of patient response to the education and provider response to the pathway.
Our objective was to report on our experience in development and patient feedback of a CIPN clinical pathway with embedded patient education.
Our objective was to report on our experience in development and patient feedback of a CIPN clinical pathway with embedded patient education. We also report on the role of the nurse navigator in developing and implementing this project. Anecdotally, an increase in referrals to the nurse navigator by providers of patients for education and of patients with CIPN onset was noted.. This project took place in 2 settings across 1 health system, requiring the project team to provide education on the project to clinicians at both sites by attending disease team meetings and tumor boards.
The nurse navigator is essential in communicating with the patient. They utilize the patient resource sheet to ensure patients understand the signs and symptoms of CIPN and when to contact the team with symptoms. Reinforcing this patient education can lead to early provider intervention with the evidence-based pathway (Figure 1) to alleviate the impact of CIPN and improve daily function. As part of the multidisciplinary team, the nurse navigator collaborates with both the patient and the providers to ensure symptoms are addressed.
The CIPN pathway was easy to implement and appears to positively influence patient satisfaction, although the sample size was small. Nurse navigators can validate and further accurately assess the severity and location of neuropathic pain in cancer patients by using a standardized pain assessment tool, such as the Nursing Pain Scale 1-10 or the Faces Pain Scale.9
The use of PROs could enhance the nursing assessment and help measure symptoms over time by consistently and systematically asking the patients about their symptoms and providing the clinical team an opportunity to check in with the patient about their symptoms.
The limitations of this project include the low number of patients who responded to the assessment of the patient education materials. An individual patient education session was the goal; however, our resources did not allow this process. As a result, only 10 patients were assessed, and ideally, we would want a higher number of evaluations. Going forward, we intend to continue to assess patient response and feedback to continually improve the materials. In addition, follow-up after completion of treatment to determine the efficacy of the education should be added moving forward.
The education did not include information about comorbidities that increase the chance of CIPN, such as diabetes or nerve injury. These factors will be added to the next version of the educational materials.
In addition, the lack of assessment of providers using the pathway limits the generalizability of the usefulness of the pathway. The second phase of this project includes a reintroduction of the pathway to the clinical team and a formal assessment of the pathway by clinical team members who have used it. We also plan to update the pathway to include any new literature on CIPN and to broaden the application from gynecologic oncology patients to patients with any cancer diagnosis.
CIPN is a distressing side effect of cancer and its treatment that has been underreported and undermanaged. The nurse navigator can serve many roles in the care of the patient with or at risk for CIPN. A lack of consistent, evidence-based information easily available to patients and providers led to the development of a clinical pathway for identification and treatment of CIPN and patient education materials. The survey confirmed that early education, provided through the patient portal, was preferred by patients. The use of PRO tools can help track symptoms over time. A culturally sensitive assessment is critical in defining and identifying the signs and symptoms of CIPN. Certain terms, such as “numbness and tingling,” may not resonate with some cultures, thus requiring a thorough nursing assessment to identify symptoms. Earlier identification of symptoms can lead to improved outcomes and compliance with treatment. Awareness of resources such as physical therapy, rehabilitation medicine, and alternative therapies can provide much-needed relief for people with CIPN and can minimize the effects of CIPN on daily function, leading to improved quality of life. The use of a clinical pathway can lead to consistent, evidence-based, early intervention of distressing symptoms. Next steps include evaluation of provider use of the pathway and continued assessment of patient response to education and symptom management. A review of the nurse navigator–led clinical response (Figure 3) will also be undertaken in the next phase of this project.
Funding: None.
Acknowledgements: The authors are grateful to Sarah H. Kagan, PhD, RN, FAAN, for support and editorial guidance.
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