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Understanding adjuvant endocrine therapy persistence in breast Cancer survivors Lambert, Leah K; Balneaves, Lynda G; Howard, A. Fuchsia; Chia, Stephen K; Gotay, Carolyn C Jul 11, 2018

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RESEARCH ARTICLE Open AccessUnderstanding adjuvant endocrine therapypersistence in breast Cancer survivorsLeah K. Lambert1, Lynda G. Balneaves2* , A. Fuchsia Howard1, Stephen K. Chia3 and Carolyn C. Gotay4AbstractBackground: Adjuvant endocrine therapy (AET) significantly decreases the risk of breast cancer recurrence andmortality. Notwithstanding the demonstrated efficacy of AET, 31–73% of breast cancer survivors do not persist withAET. The purpose of this study was to explore breast cancer survivors’ experiences and perspectives of persistingwith AET and to identify the psychosocial and healthcare system factors that influence AET persistence.Methods: Informed by interpretive descriptive methodology and relational autonomy theory, individual interviewswere conducted with 22 women diagnosed with early-stage breast cancer who had been prescribed AET. Theseparticipants also completed a demographic form and a survey that assessed their perceived risk of recurrence.Interviews were analysed using inductive thematic and constant comparative analysis to iteratively compare dataand develop conceptualizations of the relationships among data. Descriptive statistics were used to summarize thequantitative data.Results: The personal, social, and structural factors found to influence AET persistence included AET side effects,perception of breast cancer recurrence risk, medication and necessity beliefs, social support, the patient-providerrelationship, and the continuity and frequency of follow-up care. For most women, over time, the decision-makingprocess around AET persistence became a balancing act between quality of life and quantity of life. The interplaybetween the personal, social, and structural factors was complex and the weight women placed on some factorsover others influenced their AET persistence or non-persistence.Conclusion: Expanding our understanding of the factors affecting breast cancer survivors’ AET persistence fromtheir perspective is the first step in developing efficacious, patient-centered interventions aimed at improving AETpersistence. In order to improve AET persistence, enhanced symptom management is required, as well as thedevelopment of supportive care strategies that acknowledge the values and beliefs held by breast cancer survivorswhile reinforcing the benefits of AET, and addressing women’s reasons for non-persistence. Improved continuity ofhealth care and patient-healthcare provider communication across oncology and primary care settings is alsorequired. The development and evaluation of supportive care strategies that address the challenges associated withAET experienced by breast cancer survivors hold the potential to increase both women’s quality and quantity oflife.Keywords: Adjuvant endocrine therapy, Medication persistence, Breast cancer, Cancer survivorship* Correspondence: lynda.balneaves@umanitoba.ca2College of Nursing, Rady Faculty of Health Sciences, University of Manitoba,89 Curry Place, Helen Glass Centre for Nursing, Winnipeg, MB R3T 2N2,CanadaFull list of author information is available at the end of the article© The Author(s). 2018 Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, andreproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link tothe Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver(http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.Lambert et al. BMC Cancer  (2018) 18:732 https://doi.org/10.1186/s12885-018-4644-7BackgroundBreast cancer is the most common female cancer world-wide [1], and it is the second leading cause of cancerdeaths in Canadian women [2]. Mortality, however, isdeclining due in part to effective treatments that includeadjuvant endocrine therapy (AET) such as tamoxifenand aromatase inhibitors (AIs) [3]. In women withhormone-receptor positive (HR+) breast cancer, AET re-duces the risk of recurrence by up to 50% [4]. Until re-cently, five years of AET was standard treatment forwomen with HR+ breast cancer. In 2014, the AmericanSociety of Clinical Oncology (ASCO) published guide-lines that recommended AET be extended for up to10 years in high risk women [5].Persistence, defined as continuously taking AET forthe prescribed treatment duration [6], has significantclinical relevance. Non-persistence has been associatedwith a reduced survival benefit for women who discon-tinue treatment early, with a significant increase in mor-tality (26%) for women who stop AET before therecommended five-year period [7]. Meta-analyses haveshown the positive effect of long-term AET use, withfive years of tamoxifen being significantly more effica-cious in reducing breast cancer recurrence (rate ratio0.82) and mortality (rate ratio 0.91) than only one to twoyears of AET [8]. Despite the demonstrated efficacy ofAET, 31–73% of women with breast cancer arenon-persistent in real-world settings [9].To date, the literature has focused on identifying thedemographic and clinical predictors of AETnon-persistence. As a result, a gap exists in our under-standing of why a substantial proportion of women donot persist with AET for the recommended treatmentperiod. Studies have identified disease severity [10], co-morbidities [11, 12], side effects [13], and type of breastsurgery [12] as predictors of AET non-persistence.Younger (< 40 years) [12] and older (> 70 years) women[11, 14] are also at higher risk for non-persistence. Rela-tively few studies have examined the influence of per-sonal (e.g., beliefs, values), social (e.g., social support,patient-healthcare provider (HCP) relationship), andstructural factors in the healthcare system (e.g., continu-ity of care, access issues) [15–19]. Research suggestswomen with neutral or negative beliefs about the valueof tamoxifen [10, 20, 21], body image concerns [22], lim-ited social support [23], and dissatisfaction with theirrole in AET decisions [13] were more likely to discon-tinue treatment prematurely. A higher qualitypatient-HCP relationship [13], patient-centered commu-nication [24], continuity of care [13], prescription drugcoverage [25], and polypharmacy [21, 26, 27] were alsopositively associated with AET persistence. More re-cently, researchers have used qualitative methodology toexplore women’s AET experiences and their resultingadherence and persistence decisions [15, 17–19]. Whatis unique about this study is the focus on the broader so-cial and structural context and how these factors, alongwith personal factors, shape women’s AET experiencesand persistence.Increasing AET persistence has the potential to im-prove the efficacy of treatment and ultimately patientoutcomes. While some progress has been made in un-derstanding the personal, social, and structural factorsassociated with AET persistence, breast cancer survivors’perspectives related to AET and persistence are notablymissing from the literature. If effective, patient-centeredstrategies for targeting non-persistence are to be devel-oped, it is essential we look beyond the identified demo-graphic and clinical predictors, which provide anincomplete, and somewhat acontextual, understandingof AET non-persistence. Instead, qualitative inquiry thatexplores breast cancer survivors’ experiences and per-spectives is needed to better articulate the multifacetednature of AET persistence.The aim of this study was to explore breast cancer sur-vivors’ experiences and perspectives of AET use to de-scribe how personal, social, and structural factorsinfluence AET persistence.MethodsDrawing on intepretive description methodology [28]using the theoretical lens of relational autonomy, wequalitatively explored women’s experiences and perspec-tives related to AET persistence. Relational autonomy isan alternative interpretation of autonomy that considersthe personal aspects of an individual’s life, while also ac-knowledging that social, political, and economic condi-tions can influence their decisions and behaviours [29].The bulk of the research on AET persistence has pre-dominantly focused on individual aspects (e.g., demo-graphic, clinical characteristics) in isolation from thesocial and structural context that shape women’s AETdecisions and behaviours. A relational autonomy lenswas used to explore how the personal nature ofAET-related decisions and the broader social and struc-tural contexts influence breast cancer survivors’ AET ex-periences and resulting persistence. Specifically, theinterview questions and the data analysis were guided byrelational autonomy theory to explore factors such asbeliefs, social support, relationships with HCPs, and ac-cess to and delivery of healthcare resources.Participant recruitmentEligibility criteria included women diagnosed with HR+stage I to III breast cancer, referred to the BritishColumbia Cancer Agency (BCCA) between January 2005and August 2012, without a prior cancer diagnosis, re-currence of breast cancer, or secondary cancer diagnosisLambert et al. BMC Cancer  (2018) 18:732 Page 2 of 13(excluding non-melanoma skin cancer), who had com-pleted primary cancer treatment, were fluent in English,aged 18 to 79 years at diagnosis, and prescribed AET.The upper age limit of 79 years was chosen as an eligi-bility criterion to avoid contacting families of womenwho may have died since diagnosis. Upon approval fromthe appropriate institutional research ethics boards, 748women who met eligibility criteria were selected fromthe BCCA’s Breast Cancer Outcomes Unit (BCOU) data-base subset (n = 2414), which had been generated for aprevious study that found 40% of women withearly-stage HR+ breast cancer were non-adherent toAET [30]. From this sample, a letter of invitation wasmailed to 200 women who were purposefully selectedfrom four randomized lists that represented diversityacross adherence behaviour (adherent vs. non-adherent)1as well as disease severity (lymph node positive vs.lymph node negative). A total of 30 women providedwritten consent to participate, of which four (13.3%)were non-persistent with AET, resulting in a 15% re-sponse rate. Following initial consent, two women de-clined to participate without providing a reason and onewoman with a prior cancer diagnosis was excluded fromthe study. In addition, eight women persistent with AET,who had been waitlisted, were respectfully declined par-ticipation by the research team due to oversampling ofpersistent women in order to develop a sample thatmore closely represented the 40% non-adherence rateobserved in the BCOU database [30]. Due to the diffi-culty in recruiting non-persistent women to the study,additional purposeful sampling was conducted throughthe BCOU database and convenience sampling was usedto invite non-persistent women through select oncologypractices. After several months of recruitment efforts,Fig. 1 Sampling DiagramLambert et al. BMC Cancer  (2018) 18:732 Page 3 of 13three additional non-persistent women consented toparticipate and were included in the final sample of 22women (see Fig. 1).Data collection and analysisThe lead author (LKL) conducted semi-structured inter-views with 22 women in person or by phone (see inter-view guide in Additional file 1), which were digitallyrecorded and transcribed verbatim. To address possiblebiases held by the researchers, the investigative team de-veloped reflective memos regarding assumptions theyheld about the factors influencing women’s AET treat-ment decisions and behaviours prior to conducting theinterviews. Field notes were kept to capture non-verbalbehaviours occurring during the interviews and any re-lated contextual information. The women completed ademographic form and one item, previously used by An-dersen et al. (1999), which assessed their perceived riskof breast cancer recurrence on a 0 to 100 percentagescale, with 0 meaning there is no chance they will getbreast cancer again and 100 meaning they most defin-itely will get breast cancer again [31]. Women received a$15 honorarium at the conclusion of the interview. Datawas organized using NVivo™ software. Data collectionand analysis occurred concurrently, with the preliminaryanalysis informing the development of new interviewquestions and shaping existing ones [32].Inductive thematic analysis [33] was used to analyzethe interviews. Transcripts were read and re-readline-by-line, with key passages highlighted and memoscreated to reflect important themes. Two members ofthe research team (LKL and LGB) reviewed several tran-scripts to confirm the proposed coding before the cod-ing scheme was finalized. The analytic strategy ofconstant comparative analysis was used to iterativelycompare data and develop conceptualizations of the re-lationships among data [32]. The analysis drew on rela-tional autonomy theory by examining theinterrelationship among themes and the personal, social,and structural factors influencing AET persistence.Memos were kept to track methodological and analyticaldecisions [34] and were reviewed during the analysis,along with the field notes. Descriptive statistics wereused to summarize the quantitative data.Sample characteristicsWomen classified as persistent (n = 15) were either cur-rently taking AET at the time of interview or had re-cently completed the recommended five-year treatment.Within this group were some women who reported oc-casionally missing a dose or taking short medicationbreaks of less than two weeks. Women classified asnon-persistent (n = 6) had discontinued AET beforecompleting the recommended five-year treatment andone woman chose not to initiate AET. Sample character-istics and survey data are shown in Table 1.ResultsFor many breast cancer survivors, AET persistence be-came a balancing act between quality of life (QOL) andquantity of life (see Fig. 2) that was influenced by per-sonal, social, and structural factors. These influencingfactors and the interrelationships among them are de-scribed in detail below.Personal factorsPersonal factors included experience of AET-related sideeffects and beliefs regarding perceived risk of recurrence,medication, and necessity of AET.Table 1 Sample CharacteristicsSample CharacteristicsN = 22Frequency(%)Age at diagnosis18–44 years –45–60 years 11 (50)60–79 years 11 (50)Lymph Node StatusPositive 10 (45)Negative 12 (55)Hormone StatusER+ 22 (100)PR+ 16 (73)Her2+ 2 (9)Treatment HistorySurgery 22 (100)Chemotherapy 9 (41)Radiation 18 (82)AET UseTamoxifen only 7 (32)AI only 5 (23)Both tamoxifen and AI 9 (41)Did not initiate 1 (5)PersistenceNon-persistent 6 (27)Did not initiate 1 (5)Persistent 15 (68)Average Perceived Risk of Breast Cancer Recurrence (0–100%)Non-persistent/did not initiate 33%Persistent 29%Lambert et al. BMC Cancer  (2018) 18:732 Page 4 of 13Side effectsAET-related side effects (see Burstein et al. [35] for acomprehensive list) had a profound impact on manywomen’s QOL, and were the primary reason fornon-persistence in the sample. Many women did notframe their side effects as simply bothersome; rather,they used language such as “violent”, “excruciating”, and“intolerable” to describe their symptoms. They ques-tioned whether the potential reduced risk of a breastcancer recurrence and increased survival benefit wereworth persisting with AET given the severe negativephysical and emotional impact on their daily lives.I think the problem with breast cancer is that you’renot sick, but it [AET] makes you feel worse than youever felt. The side effects are potentially worse thanthe disease. It’s like, ‘Why am I doing this?’ It’s bizarre.(AET non-persistent)My joints and the cramping were sometimes unbearable.I would cry. When it would hit me at night, I would besound asleep and it would jolt me out of my deep sleep.In the beginning I did not know how to deal with it. Itaffected me in my working environment and it affectedme in my free time, and my family. (AET persistent)Some of the symptoms, including hot flashes, vaginaldryness, weight gain, hair loss, and joint pain, wereassociated with old age and altered women’s sense ofidentity. As one woman shared: “It feels like you’re an80-year old person. It’s hard to move around, to standup, to get up out of the chair and do certain things”(AET persistent). The women’s social lives were alsoaffected by the severity and unpredictability of AET-related side effectsI started to withdraw from social situations. I didn’ttrust my body to co-operate. I missed out on quite afew things, because I was too afraid that [due to thediarrhea] I would have to run or, change my clothesor have a shower. And make a mess in public. Emo-tionally, it was devastating. (AET persistent afterswitching AETs)A couple of women took AET medication breaks tolessen their symptom severity and allow them to attendimportant social events, such as vacations and weddings.AET-related side effects also compromised somewomen’s ability to function in their occupational roles.These women missed work, were unable to maintainregular work schedules, or were prevented from returningto work. Several of these women chose not to disclosetheir struggle to employers or colleagues in an effort toavoid the stigma associated with breast cancer or appear-ing sick. Consequently, these women were not offered re-turn to work programs or workplace accommodationsFig. 2 Balancing Act Between QOL and Quantity of Life in the Context of AET PersistenceLambert et al. BMC Cancer  (2018) 18:732 Page 5 of 13(e.g. modified workloads) that might have helped them tocope with side effects. While not all women directly asso-ciated non-persistence with the negative impact of AET-related side effects on their careers, they did comment onhow these work-related compromises had a substantialeffect on their productivity, performance, and satisfactionwith work.Women’s ability to tolerate and self-manage side effectsvaried considerably over time and across the sample. Forsome, AET-related side effects improved after an initialadjustment period. For others, a change in medication of-fered some relief from intolerable side effects. To enablethem to cope with the side effects and persist with AET,several women reframed their symptom experience andimplemented mantras, such as “suck it up buttercup”.Other women made changes to their lifestyle to lessen theseverity of side effects. There was a small group of women,however, who experienced intensified side effects as timewent on, or found their symptoms became less tolerable,leading them to discontinue AET early.Personal beliefs about recurrence and medicationsHow women perceived their risk of breast cancer recur-rence differed across the sample and had a direct impacton their beliefs about the necessity of AET and toleranceof side effects, which ultimately influenced their persist-ence with AET. In most cases, a higher perceived risk ofrecurrence motivated women to remain persistent withAET. In contrast, women who perceived their risk to below were more inclined to consider ending AET early:“Mine was so small and Stage I [breast cancer], so itwasn’t like a huge, life-threatening fact. So, I think nottaking the pills would be better for me at the four-yearmark” (AET non-persistent). In the interviews, womendescribed their perceived risk of recurrence as being in-fluenced by several factors, including disease severity,fear of recurrence, family history of breast cancer, previ-ous illness experiences, anecdotal stories of breast can-cer outcomes, and risk estimates provided by HCPs.During the first few months of AET use, when the im-pact of the side effects became apparent, several womenquestioned their ability to continue with AET. A height-ened perception of risk related to recurrence and a strongbelief in the necessity of AET encouraged persistence dur-ing this initial treatment period. Increased perception ofrisk also occurred after follow-up consultations withHCPs, when new health concerns developed, and after thedeath of a family member or friend from cancer.Being on these pills you start to forget what it's for.It's just like taking another pill, but when you getsome of the symptoms, when they start to flare up,then it reminds you of actually what you're doing.And then you kind of have to go back into the fightmode again and say, ‘Okay, this isn't going to kill me.’(AET persistent)For non-persistent women, their perception of risk re-lated to breast cancer recurrence decreased in the laterstages of therapy. After the third year of AET, four (18%)women in our sample discontinued therapy. The per-ceived risk-benefit ratio appeared to shift for thesewomen; they wanted their lives and bodies back, and tofeel normal again.Beliefs about the necessity of AET were largely influ-enced by how it was positioned in discussions withHCPs as an essential and expected step in the treatmenttrajectory. Hence, most women, be they persistent ornon-persistent, described AET as a treatment optionthey could not refuse.I have to say that my very first reaction on discoveringI had the sort of breast cancer that needed more thansurgery was, ‘I don’t want to take Tamoxifen’. I wasprepared for everything else. But, I really, really wasupset about the thought of taking Tamoxifen. I wasdevastated. I didn’t want to take something that wassuch a long-term thing. I knew I didn’t want to takeit, but I knew I had to take it. (AET non-persistent)For women who were AET persistent, they describedholding positive beliefs about the medication, viewing itas essential to their health. AET was seen as a “securityblanket”, an extra layer of protection in their fightagainst breast cancer and provided a sense of controlover their disease: “It was a way to fight the disease andto make sure I didn’t get it back. I read about the side ef-fects, but to me, it was all about winning the battle. I feltI was in control by doing everything in my power tofight this” (AET persistent).Other women, however, feared overloading their bodywith “chemicals” and were concerned about the poten-tially serious and long-term adverse effects of AET. Fur-thermore, some women experienced difficulty reconcilingthe idea of taking a medication that had negative side ef-fects with no immediate tangible benefits.You want the good stuff that is helping your body, butif you don’t know for sure that it’s [AET] reallyhelping your body, then why am I taking it? Do Ireally know that it’s benefiting me? And that’sprobably why I wouldn’t take it again. Or, I wouldn’tdo another five years. Because I haven’t seen thebenefits yet. (AET persistent)For some non-persistent women, these beliefs contrib-uted to their decision to forgo or discontinue treatmentearly. In contrast, for those women who persisted withLambert et al. BMC Cancer  (2018) 18:732 Page 6 of 13AET despite holding negative beliefs about medications,a heightened perception of risk of recurrence out-weighed their concerns about taking a long-term medi-cation: “It’s a drug in my body, doing things to me.There’s nothing good about doing it, but do I want toget cancer again? No. I’m more scared to get cancer thanI am to go on the pill” (AET persistent).Social factorsSocial supportMost women had a supportive social network, however,they perceived AET as a woman’s issue to be dealt withprivately, shielding their family and friends from thechallenges posed by AET. These women did not wantbreast cancer to continually impact their personal rela-tionships and social interactions; instead, they wanted tomove on with their lives, regain some sense of normalcy,and not be perceived as sick.I want my life to be about other things. So, if peopleask me how are you doing, I’m not shutting them out,but I don’t want to bring them into the full depth ofit. I’ve been awake since three o’clock this morning‘cause I woke up soaking wet and I’m grumpy and Idon’t want to bring that to my friends and family allthe time. So, I don’t talk about it as much with them.My husband knows. But I also don’t want ourmarriage to be just about that. (AET non-persistent)In contrast, some women found the support from friendsor family helped them persist with AET when side effectswere bothersome and their commitment to AET waned, asdid connections with fellow breast cancer survivors whosestories of overcoming difficulties and persisting with AETencouraged them to persevere with treatment. As well, an-ecdotal stories of survivors who took AET and survived hada powerful influence on women’s beliefs about the import-ance of AET, and consequently, their persistence.HCP relationshipClose to half of the women (n = 10) continued to receivefollow-up care from an oncologist throughout the courseof AET. The remaining women (n = 12) were dischargedto their family physician following primary treatment orafter completing the first few years of AET. Women whoperceived a positive relationship with their physiciansand had a high level of trust and confidence in their rec-ommendations about AET were more likely to persist.Further, women who perceived their physicians as em-pathic, responsive, accessible, and knowledgeable aboutAET were more inclined to discuss AET concerns inconsults, seek help in managing side effects, and persistwith AET. A breakdown in the patient-HCP relationship,however, damaged women’s trust in their physician,resulting in a perceived lack of support, poor symptommanagement, and for some women, influenced their de-cision to not persist with AET.Oncologists were particularly influential in women’sdecisions about AET persistence. A few women in oursample declined primary cancer treatment, yet agreed totake AET in an effort to preserve their relationship andaccess to follow-up care with their oncologist. Gainingpermission from their oncologist was also key towomen’s decisions to discontinue AET early, with somewomen sharing that if their physician had encouragedthem, they would have tried to persist: “I said ‘I’ve de-cided to stop [taking AET], what do you think?’ And she[oncologist] shrugs and said ‘Fine’. If she had said ‘No,definitely not, I really don’t think you should stop’, Iprobably wouldn’t have” (AET non-persistent).Some women had a lengthy history with their familyphysician, which led to a high level of trust. Other womendid not perceive their family physician as having the spe-cialized knowledge about breast cancer and AET requiredto provide adequate follow-up care. Their subsequent lackof confidence in their family physician prevented severalwomen from seeking symptom management advice,resulting in unmet supportive care needs, which influ-enced some women’s decision not to persist with AET.I wouldn’t go to the GP [family physician] because Idon’t feel that they’re up on it [AET]. Well, I don’tfeel mine is up on all that. They don’t have thatknowledge. I think someone dealing with cancer, inthe cancer setting, has more details on symptomsfrom one of those drugs. (AET persistent)Disparities existed among women in terms of the supportthey received from HCPs with managing AET-related sideeffects. Women felt satisfied when their concerns were ac-knowledged and they were offered possible solutions. Somewomen were hesitant to ask their physicians about AET sideeffects because they feared their concerns would be metwith resistance or apathy, or dismissed as being insignificantin comparison to the more severe side effects accompany-ing primary cancer treatment. As one woman shared:He [oncologist] said you wouldn’t complain if youwere on chemotherapy, given intravenously. Youwouldn’t complain about the side effects. And I said,‘No.’And he said, ‘Well, look at it this way. You aretaking a little bit of a chemo every day, and so youjust have to learn to deal with it. (AET persistent)Structural factorsThe transition from oncology to primary care was a keyturning point for many women due to inequities in theLambert et al. BMC Cancer  (2018) 18:732 Page 7 of 13provision of follow-up care. As mentioned, disparitiesexisted regarding how breast cancer follow-up care wasstructured, with some women continuing to be followedby their oncologist for five years, while others were dis-charged earlier to a family physician. Some women experi-enced a lack of continuity of care when transitioning fromoncology to primary care: “When I did go back to the fam-ily physician, I said ‘[my oncologist] dismissed me and itwas up to you to keep track of me.’And he [GP] looked atme and said ‘We don’t do that’” (AET non-persistent). Inaddition, differences existed in the care women receivedfrom oncologists versus family physicians in terms of thefrequency and type of follow-up care. Dissatisfaction withthe frequency and perceived quality of follow-up care pro-vided by family physicians contributed to some women’sdecision to stop AET early.It [transition to primary care] was annoying becauseyou know that means you’re really getting nothing.No follow up. Because you don’t get any follow upfrom a GP [family physician]. They say they don’tknow anything about cancer, it’s too complicated.(AET non-persistent)Conversely, women who continued to see an oncologistreported greater satisfaction with the provision offollow-up care as well as a sense of safety and confi-dence. The specific focus on breast cancer duringfollow-up visits with an oncologist meant that the im-portance of AET use and related symptom managementissues were more frequently discussed than in follow-upvisits with a family physician, when other health con-cerns took precedence.Access to follow-up care was an additional issue forwomen residing in rural areas due to the limited numberand availability of primary care providers. The inabilityto access HCPs with specialized knowledge of breastcancer and AET in a timely manner was disconcerting,especially when women’s worries felt immediate. One ofthe re-occurring issues most women struggled with wasa perceived lack of time to discuss AET concerns withtheir physician.The medical system is so overloaded and to deal withyour GP [family physician] is difficult. They don’t giveyou much time. You wait two hours to see him [GP],and you get to talk to him for about two minutes. Youhave to talk kind of fast, and you never get what youwanted to say all out, because you have about two orthree minutes. It’s not that conducive to getting awhole lot of help. (AET non-persistent)Access to other HCPs, such as nurses and pharmacistswith specialized knowledge of cancer and AET, provideda trusted, and often more accessible, resource forwomen. Inequities existed, however, in access to thesesupports. For instance, women participating in clinicaltrials had access to an interdisciplinary team who theyrelied heavily on to answer AET questions and providehelp with managing side effects. Other women were notoffered the same access to supportive resources. A lackof access to timely follow-up care meant some womenfelt abandoned during the survivorship period and wereuncertain of how their breast cancer care would be pro-vided, which in turn, influenced their decisions to stopAET early:I wanted to be followed up. If they’re going to startfiddling with your hormone levels, they should bechecking you every three months. There’s no checksand balances. If I had felt I was being followed andpeople knew what was happening to me, I would havefelt much better. I felt totally alone. (AET non-persistent)Balancing quality and quantity of lifeMost women reported that over time, the decision-making process around AET persistence became a diffi-cult balancing act between QOL and quantity of life (seeFig. 2). The question, ‘What if?’ plagued women, whowondered if improved QOL and reclaiming a sense ofnormalcy was worth the increased risk of a breast cancerrecurrence. For women who privileged quantity of lifeover QOL, positive beliefs about the necessity of AETand an acute perception of their risk of breast cancerrecurrence tipped the scale towards persistence. Fornon-persistent women, the tipping point in their de-cision about AET was the relative weight they placedon QOL in relation to other factors, particularly sideeffects.You’re counting the days and it becomes like youcan’t wait for the end [of AET]. I don’t know what’sgoing to happen. It may come back and I’m going todie anyway. So, I’d rather have a good quality of lifewhile I’m alive and not have side effects. (AET non-persistent)While some persistent women were steadfast in theirinitial decision, others wavered throughout the course ofAET. Several women reassessed their beliefs about thenecessity of AET and their overall commitment whenside effects intensified, concerns arose about potentiallysevere or late adverse effects of AET, perceived risk ofrecurrence decreased, a breakdown in the patient-HCPrelationship occurred, and when they were dissatisfiedwith follow-up care.Lambert et al. BMC Cancer  (2018) 18:732 Page 8 of 13The interrelationship among factors that influencedwomen to privilege either QOL or quantity of life, andto persist or not persist with AET, was complex andthere was substantial variability in how women weightedthe importance of various personal, social, or structuralfactors in their treatment decisions. For persistentwomen, social and structural factors, including supportfrom family and friends and access to timely follow-upcare with trusted HCPs who reinforced the value ofAET, helped them persist when experiencing disruptiveside effects and uncertainty about the necessity of AET.In contrast, non-persistent women struggled to continuewith AET when their QOL was adversely affected, par-ticularly in the face of insufficient support from their so-cial networks and HCPs and beliefs that challenged thenecessity and safety of AET.DiscussionThe rate of AET persistence is low in breast cancer pop-ulations and tends to decrease over time [6, 14, 23, 36,37]. Identification of patients at risk for non-persistenceand the development of efficacious supportive care strat-egies are needed to improve women’s persistence. If theefficacy of AET demonstrated in clinical trials is to berealized, the patient-reported factors influencing persist-ence in real-world settings must be addressed. In thisstudy, a relational autonomy lens was used to explorehow personal, social, and structural factors shapewomen’s AET experiences, and how these factors inter-act to influence persistence throughout the AET trajec-tory. Our study found that breast cancer survivors’decision to persist with AET was a balancing act be-tween QOL and quantity of life and was informed by acomplex interplay of factors. The relative weight womenattributed to QOL and quantity of life at different pointsin the AET trajectory was grounded in their personal ex-perience and how social and structural factors influ-enced the broader context of their AET decisions andbehaviours.Several quantitative studies have linked the presenceand severity of AET-related side effects tonon-persistence [13, 20–22, 38–41]. Our results echothese findings and further show the profound impactAET side effects can have on women’s QOL. Similar toprevious qualitative studies [17–19, 42–45], we foundthat physical side effects, including weight gain, jointpain, and menopausal-like symptoms, greatly impactedwomen’s sense of self and body image and led somewomen to feel prematurely aged, which in turn influ-enced their decision to persist with AET. Given the sig-nificant value placed on youth and women’s physicalappearance in Western society, it is not surprising thatthese side effects had an effect on AET persistence. Thismay be one area to address in future supportive careand lifestyle interventions offered to breast cancer survi-vors undergoing AET.Research suggest that women’s self-determination, ne-cessity beliefs, and their ability to tolerate side effects,can greatly influence AET persistence [15, 17–19]. Inour study, tenacity and a strong belief in the importanceof AET appeared to help persistent women cope withside effects through lifestyle modifications and commit-ting to a positive mindset. This finding is similar to pre-vious studies that found persistent women held morepositive attitudes toward AET than non-persistentwomen [21, 46]. Translating these coping strategies intoformal education resources (e.g., pamphlet, online re-source, component of group education sessions) thatcould be shared with breast cancer survivors throughoncology survivorship programs, primary care providers,and peer support groups could provide encouragementfor women experiencing difficulty with AET. Given thelimited pharmacological options available for treatingAET-related side effects [47], interventions such as cog-nitive behavioural therapy, hypnosis, yoga, and relax-ation strategies that have been effective in managingcancer-related symptoms might assist women to bettercope with the difficulties of long-term AET [48].In our study, we found that the importance womenplaced on influencing factors shifted over time. Thisfinding is similar to the results of a recent study that ex-amined the AET decision-making process and foundconcerns about AET can emerge at any point in thetreatment trajectory, resulting in uncertainty and a sub-sequent reevaluation of AET decisions [49]. As noted intwo recent qualitative studies, we also found that somewomen’s experience of AET-related side effects can im-prove over time [50, 51], however, the severity of side ef-fects for other women continued or increased. Similar toMoon et al. (2017), we found the necessity beliefs relatedto AET for some women shifted throughout the treat-ment trajectory, leading them to question the importantof AET. Unique to our study was the finding that breastcancer survivors’ perceived risk of recurrence can alsoshift over the course of therapy and influence women’soverall persistence.Identifying modifiable factors, such as women’s per-ceived risk of recurrence and beliefs about the necessityof AET, provide potential avenues to explore the devel-opment of education and support strategies that pro-mote AET persistence. Our findings suggest there arekey milestones in the AET trajectory when women areat higher risk for non-persistence that could offer criticalopportunities for intervention. For instance, studies haveshown that AET non-persistence increases sharply dur-ing the first year of therapy [23, 38, 41, 46]. These resultsreflect the difficult adjustment period after initiatingAET that cause some women to question theirLambert et al. BMC Cancer  (2018) 18:732 Page 9 of 13commitment to AET and may lead to non-persistence. Itis important to note that while many women stop AETearly in the treatment trajectory, the number of womenwho are non-persistent continues to increase over time[23, 52], as we saw with the women in our study whodiscontinued AET around the four-year mark. Further-more, evidence from clinical trials of tamoxifen suggestthat side effects continue to persist with longer dura-tions of treatment [5], indicating the need for ongoingfollow-up care throughout the entire course of AET, notonly after initial onset. It is essential that HCPs assessAET persistence at each consultation, acknowledgewomen’s concerns, and seek to address reasons fornon-persistence. In addition, as some women’s percep-tion of risk decreases over time, the benefits of persistingwith AET for the full treatment duration should bereinforced.While side effects were the primary reason for AETnon-persistence, there were women in our study whopersevered despite experiencing severe side effects. Thishighlights the importance of identifying how social andstructural contexts, in particular, the quality of thepatient-HCP relationship and women’s trust in theirphysician, can either facilitate or hinder AET persist-ence. These findings are supported by previous researchthat suggests receiving adequate support from HCPs [13,17–20, 50, 51, 53, 54], having frequent [55] and effectivecommunication [24, 51], and trust in clinician advice[17, 43] might improve AET adherence and persistence.Women reported greater satisfaction with care providedby oncologists compared to family physicians, which inturn facilitated persistence. Hadji et al. (2013) reportedsimilar findings: women who received follow-up care froma specialist were more likely to be persistent with AETthan women who received survivorship care within a gen-eral practice. As noted by Harrow et al. (2014) and Brettet al. (2018), we also found that women had concerns withthe frequency and quality of follow-up care received fromfamily physicians that influenced their decision to persistwith AET. However, given the longevity of AET and thegrowing burden placed on oncology care programs,long-term breast cancer follow-up will need to increas-ingly occur in community settings. Alternative survivor-ship care models, such as nurse-led clinics [56], may beone strategy to address the supportive care needs ofwomen undergoing AET, improve overall continuity ofcare, and increase persistence [57]. As a result, primarycare providers will require increased knowledge of AETand related practice guidelines [58], awareness of the fac-tors influencing persistence, and strategies for managingAET-related side effects to facilitate persistence and in-crease women’s QOL.Standardized symptom management protocols forHCPs, telephone support lines, and peer support groupsare just some of the possible strategies that might im-prove the experience of breast cancer survivors strug-gling with AET-related side effects. In addition,electronic resources such as evidence-based websitesand online support groups might address the healthcareaccess issues and limited social support experienced bysome women, particularly those living in rural and re-mote regions. Further to geographical differences, thediscrepancy observed in our study regarding theprovision of follow-up care (i.e., oncologist vs. familyphysician) also speaks to the potential inequities in howcancer survivorship care is delivered.Our study results highlight a number of potential areasfor further research. Identifying factors that influenceAET persistence provide potential avenues to explore inthe development of intervention strategies. Similaritiesbetween our results and the findings of recent researchconducted across North America and Europe suggestthat several factors found to influence AET persistenceare not country specific, pointing toward the potential todevelop universal intervention strategies that can be im-plemented across geographical regions [15, 17–19].Given the recent guidelines recommending AET betaken for up to 10 years in certain populations [5], fur-ther research is needed to investigate how personal, so-cial, and structural factors influence persistence in thecontext of extended therapy. Gaining HCPs’ perspectiveswill also be key to better understanding how the socialand structural factors intersect to influence survivors’AET persistence, and to inform the development ofpractical strategies for optimizing persistence. Most ofthe persistent women we interviewed experienced sig-nificant struggles related to AET side effects, indicatingthe importance of developing strategies to identifywomen facing AET-related challenges before they arelost to non-persistence.LimitationsThe results of our study are limited by the small samplesize comprised of predominately well-educated Cauca-sian women who reported a high socioeconomic status.There was some geographic variation within our samplethat revealed the unique challenges experienced bywomen that reside outside urban settings. We acknow-ledge that the percentage of non-persistent women(32%) did not equal the 40% non-adherence rate ob-served in the database used to recruit our sample, whichwas due to difficulties in recruiting non-persistentwomen who had disengaged from the healthcare systemand expressed limited interest in participating in re-search. Due to the large percentage of women who usedboth tamoxifen and an AI (41%) (see Table 1), we werenot able to distinguish our findings between these twocategories of AETs. While tamoxifen and AIs differ inLambert et al. BMC Cancer  (2018) 18:732 Page 10 of 13their side effects profiles, there may be other distinguish-ing factors associated with different regimes that couldhave influenced women’s experience in persisting withAET. Our findings only reflect women’s perspectives anddo not account for the experiences and perspectives ofHCPs. Lastly, women may have experienced recall biaswhen reflecting on their experiences surrounding AETdecisions and behaviours.ConclusionThe results of this study demonstrate that the personal,social, and structural factors influencing women’s AETpersistence are complex and can shift over time. Thereis a growing body of evidence to support the impact ofpersonal factors, such as side effects and women’s be-liefs, on AET persistence. Further exploration of howthe social and structural context in which AET decisionsand behaviours are enacted is needed to guide the devel-opment of novel supportive care interventions. As well,it will be important to gain the perspectives of HCPswho support women undergoing AET to inform prac-tical intervention strategies that can be implementedinto routine clinical practice. Addressing women’s sup-portive care needs and ultimately AET persistence willhelp to ensure optimal survival outcomes for breast can-cer survivors.Endnotes1The BCOU database used prescription refill data toassess breast cancer survivors AET adherence. Afterinterviewing women, we found that AET persistence,not adherence, was the issue in our sample populationand, therefore, women are referred to herein as persist-ent or non-persistent.Additional fileAdditional file 1: Participant Interview Guide. Interview guide utilized inthe study. (DOCX 21 kb)AbbreviationsAET: Adjuvant endocrine therapy; AI: Aromatase inhibitors; ASCO: AmericanSociety of Clinical Oncology; BCCA: British Columbia Cancer Agency;BCOU: Breast Cancer Outcomes Unit; HCP: Healthcare provider; HR+: Hormone-receptor positive; QOL: Quality of lifeAcknowledgmentsWe thank the women who took part in this study for the benefit of others.We also thank the British Columbia Cancer Agency for providing access tothe Breast Cancer Outcomes Unit Database for recruitment purposes.FundingLKL was supported by a University of British Columbia Four-Year DoctoralFellowship, a University of British Columbia School of Nursing’s Katherine Mc-Millan Director’s Discretional Fund research bursary, Registered Nurses Foun-dation of British Columbia bursaries, and a Canadian Institute of HealthResearch Psychosocial Oncology Research Training program DoctoralFellowship.Availability of data and materialsThe data supporting the study findings are not publicly available, asparticipants did not give consent for recordings or transcripts to be releasedto other researchers.Authors’ contributionsLKL, LGB and SLKC contributed to the research questions and study design.LKL was responsible for all aspects of this study including participantrecruitment, data collection and analysis, and writing initial manuscript drafts.LGB provided guidance on all components of this study including the initialdesign, data collection and analysis, and writing. LGB and AFH assisted withdata analysis and made substantial contributions to draft revisions. LKL, LGB,AFH, SLKC, and CCG discussed the study findings, contributed to manuscriptrevisions, and read and approved the final manuscript.Ethics approval and consent to participateThis study was approved by the University of British Columbia BehaviouralResearch Ethics Board certificate H13–00207. Written informed consent wasobtained from all individual participants included in the study.Consent for publicationParticipants’ consent included the development of research reports (i.e.publications) on the condition of confidentiality in that no identifyinginformation was included in the reports that would allow participants to beidentified.Competing interestsThe authors declare that they have no competing interests.Publisher’s NoteSpringer Nature remains neutral with regard to jurisdictional claims inpublished maps and institutional affiliations.Author details1School of Nursing, University of British Columbia, T201-2211 Wesbrook Mall,Vancouver, BC V6T 2B5, Canada. 2College of Nursing, Rady Faculty of HealthSciences, University of Manitoba, 89 Curry Place, Helen Glass Centre forNursing, Winnipeg, MB R3T 2N2, Canada. 3British Columbia Cancer Agency,600 W 10th Ave, Vancouver, BC V5Z 4E6, Canada. 4School of Population andPublic Health, University of British Columbia, V2206 East Mall, Vancouver, BCV6T 1Z3, Canada.Received: 3 January 2018 Accepted: 28 June 2018References1. 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