Background: Patients with cancer experience stress surrounding diagnosis and treatment. Many cancer centers employ a nurse-led education session to alleviate patient anxiety and confusion.
Objectives: The goal was to evaluate the effect of a nurse-led chemotherapy teaching session on patients’ knowledge, anxiety, and preparedness for cancer-directed therapy.
Methods: After discussing treatment with their oncologist, participants completed a survey assessing their perceived understanding of various treatment topics. After, they underwent a teaching session with an oncology nurse. The survey was readministered when patients returned for their first and second treatment cycles.
Findings: Significant increases were observed in patients’ understanding of their treatment schedule, potential adverse effects, and antiemetic medication regimen by the first cycle of therapy and a reduction in treatment-related anxiety by the second cycle of therapy.
The initiation of chemotherapy is associated with substantial emotional distress for many patients with cancer. A growing body of literature explores the traumatic stress caused by diagnosis and treatment of cancer and the subsequent development of post-traumatic stress disorder (Cordova, Riba, & Spiegel, 2017). Common fears include potential side effects, changes in lifestyle, loss of dignity, and death (Alifrangis et al., 2011). Research has shown the negative impact of anxiety on memory (Berggren, Curtis, & Derakshan, 2016). To help patients prepare for chemotherapy, the American Society of Clinical Oncology (ASCO) recommends that oncologists provide patients with written treatment plans that cover a variety of topics, including diagnosis, goal of therapy, treatment plan schedule, potential side effects, provider contact information, and more, to increase their knowledge regarding their chemotherapy (Neuss et al., 2017). With an understanding of potential side effects and management strategies, patients may have reduced stress and anxiety associated with chemotherapy, which in turn may lead to better treatment compliance, quality of life, and potentially better outcomes (Hartigan, 2003; Williams & Schreier, 2004). Pretreatment education is considered a practice standard and is critical to ensure that patients can provide truly informed consent for treatment. The optimal method for providing this education is unknown (Valenti, 2014). Among the options for providing education is individual teaching sessions with an oncology nurse, which represents a significant investment of resources by an oncology practice or cancer center. Some institutions have developed their own educational resources for patients with cancer (Matzo, Graham, Troup, & Ferrell, 2014). Other, less financially burdensome options include video or audio recordings of a chemotherapy educator, or written material for the patient to review. One institution found that posting animated educational videos on oral chemotherapy to its numerous social media outlets was an effective way to educate patients (Sullivan et al., 2016).
Hospitals affiliated with the Brown University Oncology Research Group (BrUOG) typically provide a structured nurse-coordinated prechemotherapy teaching session. These teaching sessions provide an opportunity to educate patients on treatment schedules, side effects, the use of medications to manage toxicities like nausea, and how to access the oncology team if adverse events develop. The aims of this study were to evaluate how well these sessions address patient-perceived inadequacies in knowledge and reduce anxiety after patients meet with their oncologist to discuss and prepare for the initiation of chemotherapy.
A survey was developed by BrUOG investigators and reviewed by a focused group of practicing oncologists to assess the effect of a specific chemotherapy education curriculum. Prior to participant enrollment, the protocol and survey were reviewed and approved by the institutional review boards at Rhode Island Hospital in Providence, the Miriam Hospital in Providence, the Memorial Hospital of Rhode Island in Pawtucket, Providence Veterans Affairs Medical Center, and the Women and Infants Hospital of Rhode Island in Providence. The study was registered with ClinicalTrials.gov (NCT01827761).
Eligibility criteria included people who were aged 18 years or older, were planned for initiation of chemotherapy at a BrUOG-affiliated hospital, and were scheduled for a prechemotherapy education session between October 2011 and March 2013. Chemotherapy included traditional cytotoxic agents and/or targeted therapies, administered IV or by mouth, or by a combination of routes. Patients were excluded if they had received prior chemotherapy or were receiving only hormonal agents. Participants signed an informed consent form prior to being enrolled in this study according to local and federal regulations.
After patients reviewed the proposed treatment plan with their oncologist prior to treatment initiation, they were offered the opportunity to participate in the study. Patients who enrolled completed a brief survey, which assessed their perceived knowledge of the treatment plan and schedule, anticipated side effects, and use of medications for their management on a Likert-type scale from 1 (no knowledge) to 4 (well informed). It also assessed anxiety about initiating chemotherapy (1 [no anxiety] to 4 [severe anxiety]). Participants then completed a structured nurse-led chemotherapy education session that lasted 60–90 minutes. Patients were encouraged to bring their spouse or another acquaintance with them to the teaching session, but this was not required. RNs and certified nurse specialists conducted the education sessions, which included information on the planned treatment course, specific therapies, potential side effects, the use of medications like antiemetics to help manage them, and how to contact the medical team with additional concerns, questions, or problems following administration of chemotherapy. Patients were given printed handouts that reviewed the aforementioned topics. The survey was also administered on the first day of cycles 1 and 2 of the patients’ chemotherapy. Surveys were presented by a clinical research associate who was not affiliated with the treating or teaching team.
A repeated-measures, generalized estimating equation regression model was used across the three time points. Survey responses were analyzed using ordinal values for a multinomial distribution. Because the authors were more interested in patient effects, they used a generalized linear mixed model to model random effects while analyzing results across time. Analyses were performed using SAS®, version 9.3.
One hundred ninety-six patients were enrolled and completed the survey prior to their teaching appointment; of these, five declined to answer some survey questions. One hundred eighty-two patients completed the second survey (before cycle 1). Of the 14 patients who did not complete this survey, one had transitioned to hospice, two died, five changed therapy, two refused to fill out the survey, and four were lost to follow-up. One hundred seventy-one patients completed the survey a third time (before cycle 2 or at end of treatment). Of the additional 11 patients who did not complete the third survey, two had transitioned to hospice, one died, three changed therapy, three refused to take the survey, and two were lost to follow-up. Patient characteristics and distribution of cancer diagnosis at time of enrollment are shown in Table 1. Just over half of the patients were male. Fifty-four were undergoing treatment for lung cancer, 48 for gastrointestinal cancer, and 33 for breast cancer, with the remaining patients undergoing treatment for other malignancies.
After the patients participated in a teaching session, statistically significant increases were observed in their perceived knowledge of treatment schedule, potential side effects, and use of medications to prevent nausea (see Table 2). Regarding knowledge of possible side effects, 92 patients reported that they were “reasonably informed” or “well informed” prior to the nurse-led teaching session. This increased after the first teaching session (just prior to their first cycle of chemotherapy). Responses prior to the second chemotherapy cycle showed that 164 patients reported being “reasonably informed” or “well informed.” Prior to the nurse-led session, 95 patients reported that they understood their treatment schedule “for the most part” or “completely.” After the nurse-led session, this increased to 159 and to 162 prior to the second chemotherapy cycle. Only 59 patients reported understanding how to take medications for nausea “for the most part” or “completely” prior to the nurse-lead session. After the teaching session, this increased to 149. By the second cycle of chemotherapy, this value increased to 162.
A significant reduction in patient-reported generalized anxiety about treatment was observed after the nurse-led teaching session when comparing preteaching session survey results to results at the beginning of the second cycle of therapy. Prior to the nurse-led session, 80 patients reported being “quite a bit” or “very much” anxious about treatment. After the session, this decreased to 49 patients. When the survey was repeated at the second chemotherapy cycle, these responses decreased again (n = 29). When comparing survey responses prior to the teaching visit with responses at the second cycle of chemotherapy, the authors discovered a statistically significant reduction in anxiety (p = 0.0294). In contrast, no statistically significant reduction in anxiety was observed surrounding the patients’ ability to contact a physician if a question arose (p = 0.0801) or anxiety about treatment-related side effects (p = 0.2737). At each time point, most patients reported feeling “not at all” anxious about contacting a physician if they had questions.
Chemotherapy teaching sessions, often conducted in the outpatient setting by experienced oncology nurses, are meant to educate patients about the chemotherapy they will be receiving. Within BrUOG-affiliated hospitals, education topics include an understanding of the treatment plan and schedule, potential side effects, medications to manage side effects, and when and how to contact the oncology team if adverse events develop. Some of these issues are addressed in ASCO’s Quality Oncology Practice Initiative (Gilmore, Schulmeister, & Jacobson, 2013).
This study provides evidence that a nurse-led chemotherapy teaching session conducted after the initial physician discussion but prior to the initiation of chemotherapy improves patients’ perceived knowledge of treatment schedules, anticipated adverse effects, and management of these complications. Statistically significant increases were seen in perceived knowledge prior to the first and second chemotherapy cycles. Although responses to the surveys prior to the first cycle suggest the effectiveness of the teaching session, the authors also saw significant improvement in survey responses prior to the second cycle. Patients had only one meeting with the teaching nurse, so this improvement may suggest that the patients received additional informal education by the treating chemotherapy nurse. It may also reflect increases in patient understanding and comfort after having experienced their first cycle of treatment. In addition to their own research (e.g., Internet searches), patients may also interact with other patients, healthcare providers, or professionals who provide additional information during treatment.
One surprising finding was the extent of the patients’ lack of perceived knowledge prior to the nurse-led chemotherapy teaching visit. After having met with their oncologists to discuss planned chemotherapy treatment, 104 patients reported either having no knowledge (n = 52) or being minimally informed (n = 52) about possible side effects of treatment. They reported similar knowledge deficits about their treatment schedule and what to do if they developed nausea or a fever. One possible explanation is that oncologists omitted this information. During the office visit (45–60 minutes), physicians may not routinely provide as much detailed treatment information as nurses do during a visit dedicated to chemotherapy education. Another explanation may be that the oncologists provide the information but patients cannot recall it because it is mentioned among many other topics, including diagnosis and prognosis.
Although no definitive guidelines exist, there are multiple ways to provide chemotherapy education. A randomized, controlled trial by Kinnane and Thompson (2008) of 64 patients compared standard education (personal discussion with a nurse and a written handout) to standard education plus an educational video. Using a 15-item questionnaire, the authors found that recall was better in patients who were provided with the video. A study by Schofield et al. (2008) compared chemotherapy education with or without a DVD supplement. Significant increases in terms of measures of self-efficacy and understanding of supportive care needs were found in patients who watched the DVD. In another study, however, providing a CD containing the same information as written teaching materials did not improve patients’ ability to recall details of their treatment plan (Olver, Whitford, Denson, Peterson, & Olver, 2009). Studies such as these only emphasize the heterogeneity of teaching methods and evaluation of understanding.
In addition to increasing patients’ knowledge of treatment, research has shown that chemotherapy education can play an important role in reducing anxiety. However, synthesizing the data from these studies is challenging given the variability in instruments used to measure anxiety. In two studies evaluating video recordings of chemotherapy teaching, the Hospital Anxiety and Depression Scale (HADS) was used for measurement (Schofield et al., 2008; Thomas, Daly, Perryman, & Stockton, 2000). Thomas et al. (2000) found significantly lower HADS scores in patients given the video to review compared to patients who were not given the video. On the other hand, no significant difference in anxiety was reported by Schofield et al. (2008), who evaluated the use of a supplemental DVD with chemotherapy education. In 2004, Williams and Schreier evaluated the effectiveness of educational audio recordings using the State-Trait Anxiety Instrument to measure anxiety. Although anxiety was high in both groups, anxiety decreased in women who used the audio recordings.
The current authors observed a statistically significant reduction in patient-reported overall anxiety about treatment after the nurse-led chemotherapy teaching session (p = 0.0187). They suspected that experiencing a sense of support from the cancer center staff and having a better understanding of the schedule were responsible for this reduction in overall anxiety. However, no significant reduction was found in the ability of patients with anxiety to contact a physician if a question arose. The authors believe that no significant reduction in anxiety related to patients’ ability to contact a physician was observed because most patients did not have anxiety prior to the chemotherapy teaching session. The authors hypothesized that no significant reduction in anxiety about treatment-related side effects was found before and after the teaching session because the potential to experience side effects in the future remains, regardless of education of the patient.
Strengths and Limitations
One of the strengths of this study was the generalizability of the patient sample. Patients were recruited from multiple hospitals, including a large academic and tertiary referral center, community hospitals, and a Veterans Affairs hospital. Cases also included patients with multiple types of malignancies, including lung, gastrointestinal, breast, hematologic, and genitourinary. In addition, study data were collected prospectively to limit recall bias. Sampling at three different time points allowed for assessment of teaching session effectiveness and insight into additional contributors to knowledge.
One limitation of this study was that the survey instrument had not been previously validated. To address the lack of instrument validity documentation, a focus group of clinical oncologists informally reviewed the instrument to assess the instrument for construct and content validity before the study. Previous studies have used the HADS and the State-Trait Anxiety Instrument to measure anxiety, but these instruments do not assess patient perceptions of their level of understanding of treatment plans and potential side effects; neither are they specific to the diagnosis and treatment of malignancy. To address this instrument limitation, the authors simplified the experience for patients as much as possible by asking only 10 pertinent questions. From these questions, a considerable amount of information could still be gathered and ultimately contributed to a growing body of evidence supporting the role of chemotherapy education in increasing patient knowledge and reducing anxiety.
In addition, the authors did not collect information on disease stage and whether treatment was curative or palliative in intent. All these factors could affect a patient’s ability to comprehend the treatment plan and their level of anxiety prior to treatment. Last, total accrual was not based on a statistical hypothesis but was chosen based on actual accrual during a two-year period. The data obtained from this study should be used to form statistical hypotheses for future trials about patient education in relation to chemotherapy.
Prechemotherapy education programs require substantial institutional resources to create and maintain a comprehensive teaching curriculum. This study adds to a growing body of evidence supporting the case that a nurse-led prechemotherapy teaching session substantially improves patients’ preparedness to receive chemotherapy. Future studies to better understand the most effective and efficient ways to provide prechemotherapy teaching sessions will enhance nurses’ ability to provide the highest-quality patient-centered care. Use of video recorded teaching sessions may be a cost-effective option in a resource-limited setting, but more research is needed.
About the Author(s)
Emmanuel Apor, MD, is a hematologist and oncologist at Medical Diagnostic Associates, P.A., in affiliation with the Carol G. Simon Cancer Center at Overlook in Morristown, NJ; Nathan T. Connell, MD, MPH, is an assistant professor of medicine at Harvard Medical School in Boston and the clinical chief of hematologyand an associate physician at Brigham and Women’s Faulkner Hospital in Boston, both in Massachusetts; Katherine Faricy-Anderson, MD, MPH, is an assistant professor of medicine at Alpert Medical School in Providence, RI, and a hematologist/oncologist at the Providence Veterans Affairs Medical Center; Peter Barth, MD, is a hematology-oncology fellow at Alpert Medical School and Lifespan Cancer Institute in Providence; Rouba Youssef, PhD, is a health information analyst at Healthcentric Advisors in Providence; Mary Anne Fenton, MD, FACP, is an associate professor at Alpert Medical School and a breast oncologist at the Lifespan Cancer Institute; William M. Sikov, MD, FACP, FNCBC, is an associate professor of medicine, obstetrics, and gynecology at Alpert Medical School, and the associate director of clinical research for the Program in Women’s Oncology and a medical oncologist at the Breast Health Center, both at Women and Infants Hospital of Rhode Island in Providence; Anthony Thomas, DO, is an assistant professor of medicine at Alpert Medical School and the chief of hematology and oncology at Memorial Hospital of Rhode Island in Pawtucket; Kayla Rosati, EdM, CCRP, is the director of Brown University Oncology Research Group in Providence; Andrew Schumacher, MSCHE, CCRP, is the manager of Lifespan Oncology Clinical Research at the Lifespan Cancer Institute; Alise Lombardo, BS, CCRP, is a regulatory coordinator for the Lifespan Oncology Clinical Research Department at the Lifespan Cancer Institute; Susan Korber, MS, RN, OCN, NE-BC, is the vice president of the Lifespan Cancer Institute; Humera Khurshid, MD, is an assistant professor at Alpert Medical School and a thoracic oncologist at Lifespan Cancer Institute; Howard Safran, MD, is a professor of medicine at Alpert Medical School, and the division director of Hematology/Oncology and a gastrointestinal oncologist at the Lifespan Cancer Institute; Anthony Mega, MD, is an associate professor of medicine, an associate professor of medicine in surgery, and the fellowship director of the Hematology/Oncology Fellowhip at Alpert Medical School, and a genitourinary oncologist at the Lifespan Cancer Institute. The authors take full responsibility for this content. This material is the result of work supported with resources from and the use of facilities at the Providence Veterans Affairs Medical Center. The contents do not represent the views of the U.S. Department of Veterans Affairs or the U.S. government. Connell has previously received support from the American Society of Hematology. Sikov has previously served on speakers bureaus for Eisai Pharmaceuticals and has received additional support from Celgene and AbbVie. Mega is an independent contractor for Sanofi-Aventis and has previously consulted and served on speakers bureaus for Astellas Pharma US, Bristol-Myers Squibb, and Sanofi-Aventis. The article has been reviewed by independent peer reviewers to ensure that it is objective and free from bias. Barth can be reached at email@example.com, with copy to CJONEditor@ons.org. (Submitted February 2017. Accepted May 12, 2017.)
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