Abstract
Purpose
Women being treated with chemotherapy for breast cancer experience menopausal symptoms that vary in presentation and impact on quality of life. The clinical visit before each chemotherapy cycle provides an important opportunity to allow patients to dialogue with their medical oncology healthcare providers about these symptoms and identify strategies for self-management. The objective of this study was to characterize patient and provider interactions regarding the menopausal symptom experience and management in the context of breast cancer treatment.
Methods
Thematic analysis was employed to analyze 61 transcripts from clinical encounters of women receiving chemotherapy treatment for breast cancer. Transcripts were chosen based on their inclusion of menopausal symptom discussion.
Results
Themes were separated into three distinct categories: patient, clinician, and dyadic themes. The overarching theme was goal discordance in the clinical visit, which was reflected in the following themes: unexpected and unprepared; distressed, disrupted and disturbed; clinical insensitivity; missed opportunity for management and empathy; and use of humor and colloquial language. Overall, women were unprepared for the menopausal symptom experience, and clinicians did not often provide management, interventions, or empathetic responses.
Conclusion
There is a need to develop more astute assessment and communication regarding menopausal symptoms during the clinical visit. Possible interventions include a more holistic assessment, algorithms to facilitate the clinician’s attention and response to menopausal symptoms, and treatment of symptoms.
Keywords: Breast cancer, Menopause, Symptom management, Communication
Women living with breast cancer experience symptoms of menopause regardless of age and menopausal status (pre, peri, or post-menopausal) because of estrogen deficiency [1]. These symptoms are reported to cause distress and functional disruption and decrease overall quality of life, particularly in women living with breast cancer [2] during chemotherapy. The clinic visits prior to the chemotherapy visit with the healthcare provider are an opportunity to assist and support women in managing these symptoms to lessen their potential negative impact. The goals of the clinic visit during chemotherapy treatment have been historically utilized as an opportunity to screen for toxicity, offer some anticipatory guidance, and “clear” the patients for chemotherapy. The visit is often used to provide some encouragement in getting the patient through many months of chemotherapy [3]. While survivorship visits (post treatment) explicitly state that menopausal symptoms need to be assessed and addressed, the visits during breast cancer chemotherapy tend to focus more on the symptoms that will necessitate chemotherapy dose reductions, holds, or early cessation [4]. Therefore, menopausal symptoms, while often mentioned by patients, are often not addressed by providers.
Background
The American Cancer Society (ACS) estimates that in 2022, 287,850 women will be diagnosed with invasive breast cancer [5]. Women newly diagnosed with breast cancer are treated with therapies that induce estrogen deficiency through decreasing ovarian function [1, 2]. It is estimated that 64.5% of women living with lymph node positive breast cancer receive chemotherapy treatment [6]. Most women who undergo treatment experience treatment-induced menopausal symptoms, which include hot flashes, sleep disturbances, cognitive and mood symptoms, and other physical symptoms [1, 2]. Treatment-related menopausal symptoms begin anywhere from 21 to 341 days from the start of chemotherapy, and the onset of symptoms may differ by treatment regimen [7, 8]
Menopausal symptoms are consistently rated by women living with breast cancer as some of the most distressing and pervasive treatment-related symptoms [9]. Additionally, data show chemotherapy treatments may permanently put women into menopause and that menopause symptoms persist for women through survivorship [10]. Menopausal symptoms may be managed by women independently, but are often co-managed by their healthcare providers [11]. Although hormone replacement therapy (HRT) is a widely used treatment for managing menopausal symptoms in women, use of HRT in women being treated for breast cancer is contraindicated [12].
In summary, it is well established in the literature that chemotherapy treatment and other treatments for women living with breast cancer cause menopausal symptoms [1, 2]. However, what is lesser known is how women communicate these symptoms with their provider in the clinical encounters during chemotherapy and the dyadic experience of patients and healthcare providers managing these symptoms. Therefore, the aim of this study is to describe how menopausal symptoms are presented, discussed, and resolved in the clinical encounters during early-stage chemotherapy between women with breast cancer and their medical oncology clinician.
Methods
Qualitative approach and research design
Thematic analysis (TA) was selected as the qualitative approach for this study. TA has a demonstrated history of being an effective and robust method of healthcare analysis and is a useful way to analyze a proxy of experience, such as transcribed clinical encounters [13–15].
Researcher characteristics and reflexivity
Researchers involved with the analysis were familiar with the parent study, including study participants and healthcare providers. Effort was made to reduce bias in developing the research topic and question. These efforts included minimizing background reading on the menopausal symptom experience while developing the research question and codebook. Additionally, the study was a group effort, with multiple members of the research team contributing to the development of the study, process, codebook, and analysis.
Context
The Symptom Experience Management and Outcomes According to Race and Social Determinants of Health (SEMOARS) during Breast Cancer Chemotherapy (National Institute on Minority Health and Health Disparities, R01MD012245) was the parent study. The SEMOARS Study aims to describe and racially compare the symptom experience of women with stage I–III breast cancer during chemotherapy, examine how patients and providers manage symptoms, and quantify the outcomes of symptom experience and management on the ability to receive full dose of prescribed chemotherapy [16]. In the parent study, the average age of patients was 52. Seventy-seven percent of patients self-identified as White and 23% as Black. Overall 54% of women were postmenopausal at enrollment. Demographic information was collected for 27 out of 46 clinicians who consented to audio recording. Eighteen clinicians self-identified as female and 9 as male.
Sampling strategy
Participants in the SEMOARS study, including patients and healthcare providers, served as the participants for this study. There were 453 transcripts screened for inclusion. These represented 142 participants, many of whom had multiple visits recorded. A purposeful sampling strategy was used to search the data for transcripts that included mention of menopausal symptoms from either the patient or provider. The word search tool in NVivo was used to find transcripts with relevant data. Search terms included menopause, vaginal, sleep, spotting, the change, and hot flash; search terms were updated as needed to be more inclusive. In total, 79 transcripts across 42 participants were eligible for inclusion in the study. Transcripts were coded until saturation for themes was reached, resulting in a final sample of 61 transcripts across 37 participants.
Ethical issues pertaining to human subjects.
The University of Pittsburgh (IRB number 19050299) and University Hospitals Cleveland Medical Center (IRB number 02–18–60C) provided ethical approval on 8/18/2017 and 3/22/2018, respectively. Informed consent included audio recording of clinical visits with an option to participate only in the survey portion of the study. Consent was also obtained from accompanying family members and healthcare providers. Additionally, participants could opt out of recording at any clinic visit.
Data collection
Visits between providers and participants during pre- or post-chemotherapy treatment appointments were recorded at 7 sites across Northeast Ohio and Western Pennsylvania as part of the main study. Researchers placed and retrieved digital audio recorders before and after clinic visits. Study ID-labeled digital audio files were saved to the password protected University of Pittsburgh School of Nursing study shared drive. Demographics of patients and healthcare providers were collected as part of the SEMOARS study.
Data processing
De-identified digital audio files were uploaded to the University of Pittsburgh Center for Social & Urban Research (UCSUR) Qualitative Data Analysis Program (QDAP) secure web portal for transcription. Transcriptions of the data were uploaded into NVivo for coding and analysis. First, a read-through of the data was completed to uncover salient symptoms present in clinic visits. After identifying the menopausal symptom experience as our area of focus, we developed our research question for this study. Inclusion criteria were determined as described above, and transcripts were evaluated for study inclusion. Included transcripts were read, and an initial codebook was developed using methods outlined by Clarke and Braun [17] and Creswell and Poth [18]. Using this initial coding tool, coders reviewed 5 transcripts and compared outcomes. Using this comparison, the tool was refined; codes and sub-codes were added. Three coders were randomly assigned transcripts. Codes were entered into NVivo for analysis.
Data analysis
Using TA, codes were derived from the transcripts and used to organize quotes and blocks of conversation so themes could be obtained from patterns in the data. Both inductive and deductive approaches were used to identify themes.
Techniques to enhance trustworthiness
Using the process outlined by Clarke and Braun [17], inter-rater reliability (IRR) was conducted between the three coders and a co-author of this paper who had not coded but could serve as a control for IRR. All four researchers who participated in IRR coded the same two transcripts. Codes were discussed until agreement was reached for final codes, and percent agreement was calculated to account for any original dissenting codes. Percent agreement for this coding tool was 100%.
Results
Themes and definitions
Three distinct thematic areas emerged during data analysis: patient themes, clinician themes, and themes of the dyadic experience. Themes are presented by group in Table 1 to illustrate how themes were conceptualized and provide definitions for themes.
Table 1.
Themes presented by group
| Thematic area | Theme | Definitions for themes |
|---|---|---|
| Patient | Unexpected and unprepared | Describes the menopausal symptom experience women are communicating with their providers. They were unprepared to experience the symptoms and the menopausal symptoms were unexpected |
| Distressed, disrupted, disturbed | Describes the functional and emotional impact that menopausal symptoms have on women. This theme encompasses the recurring topic of loss of womanhood in the data | |
| Clinician | Clinical insensitivity | This theme describes the indifferent and unempathetic clinical language used to describe menopause and its symptoms. Initiation of menopause was frequently described in clinical terms |
| Missed opportunity for management and empathy | Describes the nature of clinician reaction to management of menopausal symptoms. During the discussions, women would describe significant symptoms, and clinicians would move on without addressing the management of those symptoms | |
| Dyad | Use of humor and colloquial language | During discussions about menopausal symptoms, laughter was transcribed. The dyad used humor when discussing menopausal symptoms and the menopausal symptom experience |
Patient themes
Unexpected and unprepared
It became clear early in codebook development that there was a pattern of patients who were unprepared for the initiation of menopausal symptoms with their chemotherapy treatment. Often, women would express surprise at the development of these symptoms, surprise about their periods stopping, and surprise that chemotherapy was responsible for all these symptoms. However, women also often advocated for themselves by asking questions about what they could expect, how they could prepare, and what menopausal symptoms to look for.
Example One:
Patient: “Well, I have a question.”
Clinician: Yeah.
Patient: “Will my periods start again? Like, will I have to go through menopause again?”.
The examples below illustrate how women would engage in conversations with their providers about the initiation of symptoms, or symptoms continuing. The way women were posing questions at times made it seem like they were trying to prepare themselves for what symptoms were to come. There was also an indication that these were symptoms that might not have been discussed or, if symptoms were discussed, patients did not always remember these discussions.
Example Two:
Patient: “Um, will… will my period just stop? ‘Cause – like I probably should be expect—like if it was going to come, it would be maybe next week or something. But don’t expect it?”
Example Three:
Clinician: How about periods? Are you…
Patient: Uh, it’s like the craziest thing!
Clinician: What’s going on with them?
Patient: It’s like, “am I having a period, or am I not having a period? Am I have a period…”
Clinician: Spotty, or what’s going on?
Distressed, disrupted, and disturbed
A related but distinct theme from unexpected and unprepared is distressed, disrupted, and disturbed. Women who are unprepared and experiencing unexpected symptoms will experience distress as a result of their symptoms. Women expressed their distress, disruption, and disturbance in ways that are unique and independent of their expression of unpreparedness and unexpectedness. All examples below are taken from patients.
Example One:
“And sometimes at night, I mean, it’s just like, I’ll wake up 10 times just in a sweat. Is that, I mean –”
Example Two:
“Sleeping isn’t really that great. I don’t know why, but I can’t sleep. I keep getting hot.”
Example Three:
“The trouble – I either have trouble going to sleep, or once I get to sleep, staying asleep, and it’s like you’re waking up every two hours, and then you’re so hot. It’s just ugh. [whispers] (I’ll get nasty?) I’m a troop—[clinician laughs] I’m a trooper, I’m a survivor.”
Clinician themes
Clinical insensitivity
Our analysis found that the language clinicians used to describe the initiation of menopausal symptoms and cessation of menopausal symptoms often did not reflect empathic communication. Additionally, the clinical nature of the language used might have risen to the level of clinical “jargon” making the explanation poorly understood by patients.
Example One:
Clinician 1: The muscle pain, joint pains. [unintelligible] done, dear, you may also be experiencing that we’ve, we’ve shut down your periods. What we’ve done is your ovaries…
Patient: And I think it did come on around that time, [unintelligible]—[talking over one another]
Clinician 2: Yeah, your ovaries are shutting down, your ovaries are now shutting down. So you’re starting to get old lady bo—aches and pains.
Patient: Mm-hmm.
Clinician 2: ‘Cause, you know, the – one of the things that the chemo has done, is shut your ov—is shutting your ovaries down. You won’t have periods pretty soon.
Patient: Oh OK, yeah. ‘Cause I did come on around that time.
Clinician 2: Yeah, and I think that’s what it is, dear.
Patient: They’re shutting down. That’ll work for me. [laughs].
Clinician 2: That’s – that’s a side effect, dear. That’s what’s going on.
Patient: [talking over clinician 2] Well, it is a hormone change, I mean, you know, ‘cause…
Clinician 2: Yeah, yeah.
Patient: …you know, vaginal dryness, I’m starting to experience, (you know,?) down there, so.
[talking over interviewee] clinician 2: (No, no, no?). Yeah, yeah. We are putting you into menopause, dear.
Patient [laughs]: Menopause.
Example Two:
Patient: And my hot flashes are getting worse, I think.
Clinician: Are they?
Patient: I think so.
Clinician: Have you had any periods since you started chemo?
Patient: Nope.
Clinician: OK. So it may or may not be sending you into menopause at this point, but there’s not really a way to know. Even if it gets rid of your periods, it doesn’t necessarily mean that you’re in menopause, so. But it can give you all the side effects like (those like?) hot flashes, night sweats, mood swings…
Patient: [talking over Interviewer] Yeah.
Clinician: …all that kind of stuff. [laughs] So you can get all the downsides of it at the same time [unintelligible].
Patient: (Oh?).
Clinician: Yeah. [laughs].
Missed opportunity for management and empathy
There was a distinct pattern of women initiating menopausal symptom discussions, or reporting menopausal symptoms, and clinicians exhibiting little empathy and dismissing the symptoms, without further assessment or intervention.
Example One:
Patient: have hot flashes now again…
Clinician: Yeah yeah.
Patient: …from the meds, so I don’t know what that’s about.
Clinician: It’s stress.
Patient: I know.
Clinician: Stress will… stress aggravates hot flashes. So that’s, um… how is your range of motion? Yeah, OK, but you’re feeling the tightness all along there. Yeah.
Example Two:
Clinician: Like hot flashes?
Patient: Probably… I’m assuming, ‘cause they just – they took my ovary out, and…
Clinician: Yeah, right.
Patient: Between that and the chemo, I just—
[talking over clinician] Clinician: Yep.
Patient: …it’s covers off, covers on, covers off.
Clinician: Yeah, it’ll do it. Any mouth sores?
Example Three:
Clinician: Well, the biggest side effect is menopausal symptoms. Menopause.
Patient: And I’m already having hot flashes, like – not a ton, it – actually it coincides when I’m anxious, like when I get anxious or, you know, I’ll have a hot flash, but I can’t say that always happens. But they’re not ridiculous hot flashes – I mean, sometimes at night they are, but like, I mean, really, they just go away, they’re fine, but.
Clinician: I mean, that’s the biggest thing: menopause, menopause, men—and the osteo – we can talk about it at a later time, I don’t want to…
Patient: OK.
Clinician: …(unintelligible), but I just want you to start thinking about contraception.
Dyadic theme
Use of humor and colloquial language
We discovered in our analysis that there would often be a humorous dialogue between women and their providers regarding menopause, and menopausal symptoms overall. Often, laughter was transcribed, and colloquial language was seemingly used to lighten the mood or topic of conversation.
Example One:
Clinician: …And no fevers, right? You haven’t had any fevers?
Patient: No. I’ve had hot flashes – it’s just like a fever, so. [Interviewer laughs] I don’t know what the difference is – no, I’m just teasing. I would know. I would know. I think so, at this age. [laughs]
Clinician: [laughs] Go ahead and lie back for me.
Patient: [unintelligible]… oh goodness.
Example Two:
Patient: Um, how can I tell? If I’m going through the change, like I wouldn’t say it’s new, but I can…
Example Three:
Clinician: Yeah, probably the… oh, OK. Yeah – well, chemo and perimenopause…
Patient: So I’m just having – sometimes I have a personal summer. [laughs].
Discussion
Goal discordance, which was reflected in the salient themes of clinical insensitivity and missed opportunity for management and empathy, offers a key opportunity for intervention. We noted a difference between patient and provider goals in the clinical visit. For example, it seemed clear that the goal of the clinician was to determine if the patient was healthy enough to continue to treat with chemotherapy. The patient’s goal for the visit seemed to be to connect with a clinician who would help treat, relieve, and explain the symptoms they were experiencing. The discordance between these goals is captured in the dyadic experience of the clinic visit.
Overall, we found women were unprepared for the experience of menopausal symptoms during chemotherapy and that providers and women were not always engaging in dialogues about the menopausal symptom experience. These results are consistent with another qualitative study that found patients favored collaborative communication with providers to manage symptoms during breast cancer treatment, whereas providers preferred communication that was agenda focused [19].
Clinical implications
Clinical encounters during treatment for breast cancer are an important opportunity for patients to communicate their symptom experience and for providers to provide interventions to manage these symptoms [20]. Visits between chemotherapy may be the only time women can talk to a provider about their menopausal symptoms. Therefore, it is critical for providers to utilize clinical encounters to provide interventions for symptom management. Two studies have reported menopausal symptoms discussions and interventions did not occur in up to 77% of visits [21, 22]. Although we did not quantify this phenomenon in our study, these findings are consistent with a pattern we saw of patients reporting menopausal symptoms and clinicians not offering any intervention. Data show there are alternative options to HRT, like acupuncture, cognitive behavioral therapy, exercise, limiting alcohol, and non-hormonal medications, that are effective in managing menopausal symptoms in this vulnerable population [23]. Healthcare providers treating women living with breast cancer should be aware of alternative symptom management techniques and resources in their clinical setting.
Understandably, medical oncologists focus their pre- and concurrent-chemotherapy education on potentially life-threatening and disabling symptoms—neutropenic fever, GI symptoms, neuropathy, bone marrow suppression—and changes to physical appearance, such as hair loss and nail changes. However, when the patient is not informed of the potential for menopausal symptoms and, perhaps as important, what exactly those symptoms might be, feel like, or how to mitigate them, women may experience an unnecessary level of distress and decline in health-related quality of life (HRQOL). Reductions in HRQOL during breast cancer chemotherapy have been found to be predictive of early treatment discontinuation (Richardson et al.). Thus, pre-chemotherapy education that includes potential menopausal symptoms should be standard.
Menopausal symptoms are variable and differ between patients, and not every patient will respond to symptom mitigation efforts in the same way. Therefore, it would be advisable to establish a baseline of menopausal symptom type and severity at first complaint. At that time, symptom management recommendations could be made based on those factors, as well as the patient’s individual medical and social history. Further inquiries into menopausal symptom burden and management success should then be made at each subsequent visit. Improvement of thorough communication between patients and their medical oncology providers cannot be overstated, especially when the patient is in mid-to-late treatment and potentially experiencing multiple symptoms. However, if the medical chart serves as a reminder that menopausal symptoms were discussed during previous visits, it may help remind the dyad to continue the conversation in subsequent visits.
Limitations
A strength of this study was the rigor of our methodology and the unique nature of the data, allowing an intimate look at clinical encounters. A limitation of the study was that we could only read the transcripts of the clinical encounter; we did not listen to the audio recordings. Therefore, it is possible, if not likely, that some nuance and tone from the conversations were lost in transcription.
Conclusion
In this study, the major themes identified were unexpected and unprepared; distressed, disrupted, and disturbed; clinical insensitivity; missed opportunity for management and empathy; and use of humor and colloquial language. The overarching theme found was goal discordance. The apparent focus of clinicians on dose limiting symptoms preventing chemotherapy administration, rather than a more holistic approach, illustrates that symptom management and the clinical encounter can be more comprehensive to the unique patient symptom experience. This manuscript advances the field by clearly demonstrating missed opportunities for optimal symptom management during breast cancer chemotherapy. The results of this qualitative study underscore the need for tools for assisting clinicians with symptom management discussions. Future directions for research include testing of a more holistic endocrine deprivation assessment tool and algorithms to facilitate the clinician’s attention and response to menopausal symptoms.
Funding
This study was funded by the National Institute on Minority Health and Health Disparities.
Footnotes
Ethical approval The University of Pittsburgh (IRB number 19050299) and University Hospitals Cleveland Medical Center (IRB number 02–18–60C) provided ethical approval on 8/18/2017 and 3/22/2018, respectively.
Consent to participate Informed consent included audio recording of clinical visits with an option to participate only in the survey portion of the study. Consent was also obtained from accompanying family members and healthcare providers.
Competing interests The authors declare no competing interests.
Data availability
Our data may be accessed by contacting the authors with a request.
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Associated Data
This section collects any data citations, data availability statements, or supplementary materials included in this article.
Data Availability Statement
Our data may be accessed by contacting the authors with a request.