Communicating About Chemotherapy-Induced Nausea and Vomiting: A Comparison of Patient and Provider Perspectives

Despite recent progress, chemotherapy-induced nausea and vomiting (CINV), especially delayed CINV, continues to be a problem. Delayed CINV is underestimated and perceived differently by providers and patients. Communication between providers and patients about this side effect may help improve outcomes. This study identifies patients’ and providers’ perceptions of management and barriers to quality CINV care. Provider and patient versions of a Nausea and Vomiting Management Barriers Questionnaire were developed to address potential barriers. Providers and patients were given opportunities to add detail in open-ended questions. Providers were recruited through the NCCN and the Oncology Nursing Society mailing lists. Patients who received at least 2 cycles of chemotherapy and experienced CINV were recruited through a consortium of advocacy groups. Both providers (n = 141) and patients (n = 299) completed the survey. Providers (41%) and patients (42%) agreed medication side effects were a concern, but more patients (63%) than providers (36%) tried to limit the number of medications taken (P < .0001). Many providers (67%) spontaneously reported barriers to managing CINV, with financial and patient-related factors among the most common. Few patients (10%) reported cost as a barrier, but 37% endorsed the desire “to be strong by not complaining.” Barriers to communication and quality care of CINV differ between caregivers and patients. Addressing misconceptions and establishing mutually consistent goals will lead to more effective overall care.

Nausea and vomiting are two of the most common and debilitating side-effects of chemotherapy and can result in significant morbidity and adversely impact patient quality of life.14 Nausea and vomiting secondary to chemotherapy may lead to poor compliance with further chemotherapy treatments and result in metabolic imbalances, decline of the patient’s mental and performance status, degeneration of self-care and functional ability, anorexia, and withdrawal from potentially useful or curative anticancer treatment.5 The frequency of nausea and vomiting depends primarily on the emetogenic potential of the chemotherapeutic agents used, but can also be affected by patient-factors. Risk factors include age younger than 50 years, female sex, vomiting during previous chemotherapy, history of pregnancy-induced nausea and vomiting, anxiety, history of limited alcohol intake, and history of motion sickness.6,7

Chemotherapy-induced nausea and vomiting (CINV) are classified into acute and delayed phases based on time of onset. With the introduction of the 5-HT3 receptor antagonists in combination with corticosteroids (e.g., dexamethasone) in the early 1990s, 70% to 90% of patients receiving highly emetogenic chemotherapy were protected from acute emesis.8 However, 40% to 60% of patients have symptoms in the delayed phase.9 More recently, another class of antiemetics were introduced, the neurokinin-1 (NK1) receptor antagonists. The addition of NK1 receptor antagonists to standard therapy significantly improves emesis protection in the acute and, in particular, delayed phase by approximately 20%.10

Despite progress in symptom control, CINV continues to be a problem, especially in the delayed phase. Nausea and vomiting remain among the most feared adverse effects of chemotherapy among patients with cancer.11 Delayed CINV typically occurs with administration of chemotherapeutic agents such as cisplatin, carboplatin, doxorubicin, or cyclophosphamide, and occurs more than 24 hours after chemotherapy administration.12 This underscores the problem that delayed CINV usually occurs after hospital or clinic discharge, when patients do not have immediate contact with their providers, thus requiring patient initiative to make the provider aware of the problem.

Providers and patients differ in their perceptions of the efficacy of CINV management. Grunberg et al.7 showed that oncologists and oncology nurses underestimated the incidence of delayed nausea and vomiting by approximately 30%, and found gaps in perception between professionals and patients. Because even a modest amount of nausea and vomiting can have a significant effect on quality of life,13,14 clear and accurate communication between oncology health care providers and patients is particularly important. This study attempted to identify opportunities for improving the treatment of CINV through enhancing this communication. Survey data regarding perceptions of patients and providers about CINV management, including efficacy and use of current antiemetics, were collected to identify similar and differing perceptions of communication, management, and barriers to quality care of CINV.

Methods

Participants

Patients were eligible if they were at least 18 years of age and had breast cancer, colorectal cancer, leukemia, lymphoma, or lung cancer. Patients must have had prior experience with chemotherapy for at least 2 cycles, had prior experience with CINV, and been able to understand and provide informed consent.

Eligible providers were either oncologists or oncology nurses who specialize in cancer treatment, had at least 3 years experience treating patients with moderately to highly emetogenic regimens and/or CINV,15 and treated at least 10 different patients undergoing chemotherapy in a typical week.

Study Procedures

This study was approved by the NorthShore University HealthSystem and Northwestern University’s Institutional Review Boards. Patients were notified about the study via email from participating advocacy groups and through notices posted online at the following advocacy group Web sites: Breast Cancer Network of Strength (www.networkofstrength.org), CancerCare (www.cancercare.org), Cancer Wellness Center (www.cancerwellness.org), Colon Cancer Alliance (www.ccalliance.org), Gilda’s Club (www.gildasclub.org), Imerman Angels (www.imermanangels.org), The Leukemia & Lymphoma Society (www.lls.org), Lung Cancer Support Community (www.lungevity.org), and The Wellness Community (www.thewellnesscommunity.org). Interested patients could call with questions or log on to a study-specific Web site for additional information. Patients were instructed to fill out a consent form and HIPAA authorization form online. After providing informed consent and logging in, patients were asked to answer several sociodemographic (e.g., age, gender, race) and clinical (e.g., type of cancer, type of chemotherapy received) questions and specific questions asking about CINV. Patients were also asked through which organization they were informed about the study, and donations were remitted to that organization in the amount of $40 per participant. Patients were compensated $20 for their completed survey.

Oncologists and oncology nurses were recruited through the NCCN physician directory and guidelines panels and the Oncology Nursing Society (ONS), respectively. Provider surveys were administered via a Web-based platform (SurveyMonkey), with an invitation to participate provided to oncologists via targeted emails from the NCCN, and to oncology nurses via mailed letters, with addresses of potential participants provided by the ONS. Recruitment through these professional organizations maximized diverse and national representation of provider groups. Providers were given a link to a study-specific Web site for additional information and an online consent form. After providing informed consent, participants then completed questions about sociodemographics (e.g., age, gender) and professional experience (e.g., whether they had at least 3 years experience treating patients with moderately to highly emetogenic regimens and/or CINV, number of patients treated during a typical week who undergo chemotherapy) and questions about management of CINV. Providers were given an honorarium of $100 for completing the survey.

Measure

Nausea and Vomiting Management Barriers Questionnaire: A 42-item patient (Appendix 1, available online, in this article, at www.JNCCN.org) and a 32-item provider (Appendix 2, available online, in this article, at www.JNCCN.org) Nausea and Vomiting Management Barriers Questionnaire (NVMBQ) were developed using the Fatigue Management Barriers Questionnaire (FMBQ)16 as a template. Patient-related barriers to communicating about CINV have not been well studied, but barriers to communicating about fatigue can inform this work. The FMBQ was developed to help identify patient-reported attitudes and beliefs that may hinder effective management of fatigue in patients with cancer. The FMBQ comprises items that reflect a variety of known barriers to fatigue management: belief in treatment futility, fear of disease progression, desire to be a “good” patient,” fear of distracting the doctor from primary cancer treatment, lack of concern over the meaning of symptoms, desire to limit medications, fear of jeopardizing cancer treatment, and lack of physician-initiated communication. To account for the differences between CINV and fatigue barriers, FMBQ items were reviewed and new items were written with input from clinical experts in the management of CINV.

A provider NVMBQ was then developed based on the patient NVMBQ to permit collection of provider-related information on barriers to CINV management and to facilitate comparisons of patient and provider perspectives. Parallel and unique items were included in the provider and patient NVMBQs, and response options used a 4-point Likert scale ranging from 1 (strongly disagree) to 4 (strongly agree). The patient NVMBQ contained several content areas consistent with the FMBQ content areas: desire to be a “good” patient, provider accessibility, lack of concern over CINV, treatment futility, and general medication concerns. Patients and providers were each given the opportunity to add qualitative information to the survey through responding to open-ended questions.

Analysis

Patient and provider surveys were tabulated by the frequency with which respondents agreed (“somewhat agree” or “strongly agree”) or disagreed (“somewhat disagree” or “strongly disagree”) with NVMBQ items. The top 5 items were identified at either end of the continuum (barriers and nonbarriers in CINV management) for both patient and provider questionnaires. Individual item rankings were compared among patient and provider groups using a Mantel-Haenszel X2. An alpha level of P < .004 was used after applying a Bonferroni correction to account for multiple comparisons (N = 11 item pairs). Open-ended responses were reviewed to identify themes and then tabulated based on frequency of endorsement.

Results

The patient sample consisted of 299 participants with a mean age of 49.3 years (standard deviation [SD], 11.4). This group of cancer patients was predominantly female (67.2%) and white (93.7%). The provider sample consisted of 63 oncologists and 78 oncology nurses, with a mean age of 47.3 years (SD, 9.1) and 44.3 years (SD, 9.8), respectively. Thirty-one of the oncologists (49.2%) were affiliated with NCCN institutions and 32 (50.8%) were affiliated with community-based practices. Among the oncology nurses, 22 (28.2%) indicated they were advanced practice nurses and 56 (71.8%) worked as staff nurses. Additional descriptive characteristics for both samples are provided in Table 1.

The most and least frequently endorsed barriers to CINV management were tabulated for both patients and providers (Tables 2 and 3, respectively). For patients, the most common barriers were medication concerns and desire to be a “good” patient. In general, patients denied avoiding taking medications because of cost. For providers, the most common barriers were medication concerns and reliance on patient report. All providers agreed that treatments for prevention of nausea or vomiting were “worth the expense.” However, both providers and patients also indicated a perception that the occurrence of CINV suggested treatment efficacy.

Table 1

Sociodemographic and Clinical Summary of Patient and Provider Samples

Table 1
Table 2

Most Common Barriers to Managing Chemotherapy-Induced Nausea and Vomiting for Patients and Providers

Table 2

A comparison of parallel items highlighted differences in beliefs regarding the management of CINV among patients and providers (Figure 1). Although both patients and providers acknowledged that nausea or vomiting was an expected side effect of treatment, patients were more likely to assign a lower priority to its treatment (P < .0001) and to prefer that their providers focus on “curing” their illness rather than “controlling” nausea and vomiting (P < .0001). Other differences in patient and provider perspectives included providers’ greater awareness of effective treatments for nausea or vomiting (P < .0001) and patients’ greater desire to limit medications (P < .0001).

Table 3

Least Common Barriers to Managing Chemotherapy-Induced Nausea and Vomiting for Patients and Providers

Table 3

An examination of patients’ and providers’ open-ended responses provided instructive examples of barriers to effective CINV management. For example, after completing the Likert scale response options from the NVMBQ, patients were asked, “What else, if anything, prevented you from talking to your provider about your nausea and vomiting?” Twenty-one percent of the patients (N = 63) responded to this question with the desire to be “strong” or a “good patient” among the most common responses (19%). Before completing the Likert scale response options for the provider version of the NVMBQ, the participants were asked, “What, if any, barriers exist to managing your patients’ CINV?” Although some providers (33%) responded that they experienced no barriers, 39 oncologists (62%) and 55 nurses (71%) listed perceived barriers of financial issues (76%) and patient factors (i.e., compliance and underreporting, 21%) as the most common.

Figure 1
Figure 1

Comparison of Patient and Provider Parallel Questions

Citation: Journal of the National Comprehensive Cancer Network J Natl Compr Canc Netw 10, 2; 10.6004/jnccn.2012.0018

Discussion

This descriptive, comparative study simultaneously explores patient and provider perspectives concerning the presence of CINV and barriers to the management of CINV. It expands on the work of Grunberg et al.7 and addresses an important gap in research on patient and provider communication. An examination of participant responses revealed both converging and diverging viewpoints. Most notable were perceptions of financial and medication barriers and differing expectations regarding CINV prevention.

Providers frequently endorsed financial barriers as a challenge to CINV. Providers believed that treatments for CINV prevention were “worth the expense,” but highlighted concerns over insurance coverage, copays, and formulary restrictions. Other studies have underscored the financial aspects of CINV, noting that CINV visits are common and costly.17,18 Although 80% of oncologists feel it is important to be explicit about the impact of treatment choices on patient finances, only 42% discuss chemotherapy costs issues “always or most of the time,” and many oncologists simply refer patients to support staff for these discussions.19 However, financial issues do not seem to be a significant barrier for patients, with 9 of 10 patients in this study denying that cost is a reason they avoid taking medicines for CINV. Although the process of managing the complexities of the health care system and insurance coverage may be daunting, the degree to which this is truly a barrier for CINV prevention and treatment was relatively modest in this study’s patient population.

Patients and providers both expressed a concern about medication side effects and a desire to limit medications. Concern about medication side effects was endorsed at a comparable level for both groups. It was the most frequently endorsed barrier to CINV management for providers and the second most frequently endorsed barrier for patients. This is consistent with a survey of oncology providers in the United Kingdom, which identified several side effects related to antiemetic use for CINV management, with constipation secondary to treatment with 5HT3 receptor antagonists among the most common.20

Although patients and providers in this study both reported a desire to limit the number of medicines used, this was a greater barrier to CINV management for patients than it was for providers. Research on medication adherence for management of CINV is virtually nonexistent, but in an article reviewing patient adherence to medication, typical barriers noted by patients included forgetfulness, other priorities, decision to omit doses, lack of information, and emotional factors.21 Use of complex regimens, failing to adequately explain the benefits and side effects of a medication, inadequate consideration of the patient’s lifestyle or the cost of the medications, and a poor therapeutic relationship with the patient may limit patient adherence.

Patients and providers may have differing expectations regarding CINV management, which in turn contribute to underreporting by patients. Patients were more likely than providers to minimize their nausea and vomiting relative to other problems, and to believe that nausea or vomiting was an expected side effect of treatment or their disease and thus not necessary to treat or even report. Approximately one-third of patients said they tried to “be strong by not complaining” about their nausea and vomiting to their provider, and that nausea or vomiting meant their “treatment was working.” Not surprisingly, providers exhibited a greater awareness of effective treatment to prevent CINV and a greater likelihood of prioritizing management of CINV relative to other treatment goals. Providers strongly endorse the need and ability to treat CINV, whereas patients seem more likely to accept CINV as a distressing but normal part of treatment. This relative lack of knowledge and concern by patients may contribute to CINV being a lower priority in the scope of their treatment goals. In addition, patients may wait until their office visits to report any episodes of CINV, the incidence and intensity of which is likely subject to recall bias. The resulting underreporting of the frequency and intensity of CINV contradicts the belief of providers that if nausea and vomiting are a problem, their patients will inform them. Therefore, the fact that as many as one-third of providers still do not believe significant barriers exist to good symptom management is certainly concerning.

Efficacy of care is enhanced when providers and patients share goals. Referencing treatment guidelines for antiemetic therapy in oncology is a useful and important step in this process.5,22,23 However, sustained improvements in CINV management do not result from attending expert lectures or reviewing national antiemetic guidelines.24 Instead, physicians’ adherence to management improves when patient reports highlight that current practices are failing to manage CINV adequately.24 A potential strategy for improving CINV management may involve mobilizing and adapting existing technology to monitor symptoms.25 For example, monitoring could be performed through phone calls to the patient or through Web- or cell phone–based reporting in real time. This addresses the problem of recall bias at the next visit, minimizes the barrier that “patients will tell...if they have a problem,” and allows real-time intervention for patients who develop CINV. In these and other ways, harnessing technological advances to improve patient care could be particularly useful for facilitating improved management of CINV, particularly in the delayed phase.

This study had some limitations. First, the primary measure of this study, the NVMBQ, although adapted from an existing well-validated instrument (the FMBQ), has not been independently validated. This study did not use the measure as a diagnostic tool; rather, it was used to identify themes and differences in patient and provider perceptions. Second, eligibility criteria did not exclude patients based on time postchemotherapy, and thus some recall bias may have been introduced. Third, this research used a convenience sample and may not be representative of the general population. For example, subjects were highly educated. This higher education level might imply that they had a higher income level and thus fewer financial barriers relative to a lower-income population. In addition, people who respond to an online survey might be those who feel that they have something to complain about. Fourth, the investigators did not identify true patient–provider dyads and thus could not directly evaluate communication dynamics between the oncologist and patient or between the oncology nurse/advanced practice nurse and patient. An examination of these dyads in-clinic would be informative as understanding of the communication processes surrounding management of CINV continues to expand.

Examination of communication barriers to optimal CINV management from the patient and providers’ perspective is an important and timely issue. This study’s findings identify both key similarities and notable differences between patients and providers, particularly regarding treatment-related expectations and the role of prioritizing CINV management relative to other treatment goals. Additional work could build on these findings through prospective observational studies using real-time assessment and innovative symptom monitoring approaches to better understand the patient experience of CINV and enhance patient and provider communication.

The authors would like to acknowledge the contributions of Project Steering Committee Member Diane Blum, MSW, as well as Project Team Members Jessica Noonan, BA; Nan Rothrock, PhD; Sarah Rosenbloom, PhD; and Susan Yount, PhD. The authors would also like to thank Donna Scharff at NCCN for her role in provider recruitment and data collection.

Portions of these findings were presented at the 2009 annual meeting of the Oncology Nursing Society and the Multinational Association of Supportive Care in Cancer/International Society of Oral Oncology 2009 International Symposium. This study was designed and conducted by independent investigators at the Feinberg School of Medicine, Northwestern University. Support for the study was provided by a grant from GlaxoSmithKline.

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Correspondence: John M. Salsman, PhD, Department of Medical Social Sciences, Northwestern University Feinberg School of Medicine, 625 North Michigan Avenue, Suite 2700, Chicago, IL 60611. E-mail: j-salsman@northwestern.edu
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