Understanding adjuvant endocrine therapy persistence in breast Cancer survivors

Abstract

BackgroundAdjuvant endocrine therapy (AET) significantly decreases the risk of breast cancer recurrence and mortality. Notwithstanding the demonstrated efficacy of AET, 31–73% of breast cancer survivors do not persist with AET. The purpose of this study was to explore breast cancer survivors’ experiences and perspectives of persisting with AET and to identify the psychosocial and healthcare system factors that influence AET persistence.MethodsInformed by interpretive descriptive methodology and relational autonomy theory, individual interviews were conducted with 22 women diagnosed with early-stage breast cancer who had been prescribed AET. These participants 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 data and develop conceptualizations of the relationships among data. Descriptive statistics were used to summarize the quantitative data.ResultsThe 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-provider relationship, and the continuity and frequency of follow-up care. For most women, over time, the decision-making process around AET persistence became a balancing act between quality of life and quantity of life. The interplay between the personal, social, and structural factors was complex and the weight women placed on some factors over others influenced their AET persistence or non-persistence.ConclusionExpanding our understanding of the factors affecting breast cancer survivors’ AET persistence from their perspective is the first step in developing efficacious, patient-centered interventions aimed at improving AET persistence. In order to improve AET persistence, enhanced symptom management is required, as well as the development of supportive care strategies that acknowledge the values and beliefs held by breast cancer survivors while reinforcing the benefits of AET, and addressing women’s reasons for non-persistence. Improved continuity of health care and patient-healthcare provider communication across oncology and primary care settings is also required. The development and evaluation of supportive care strategies that address the challenges associated with AET experienced by breast cancer survivors hold the potential to increase both women’s quality and quantity of life.Electronic supplementary materialThe online version of this article (10.1186/s12885-018-4644-7) contains supplementary material, which is available to authorized users.

How patients experience endocrine therapy for breast cancer: an online survey of side effects, adherence, and medical team support

“…This suggests that understanding of the importance of therapy may not be sufficient for adherence when patients face medication-related side effects that significantly interfere with quality of life. While medical team support and communication are important factors influencing ET adherence [ 6 , 9 , 14 , 40 – 45 ], we did not find that feeling “supported” by the medical team was associated with improved medication adherence. A very low number of survey respondents reported financial concerns related to ET or as a reason for discontinuing therapy.…”

The Impact of Medication Side Effects on Adherence and Persistence to Hormone Therapy in Breast Cancer Survivors: A Qualitative Systematic Review and Thematic Synthesis

“…Side effects were self-reported by participants and both physical and psychological side effects from HT were reported in the included studies. The most commonly reported physical side effects were fatigue (26)(27)(28)(29)(30)(31)(32)(33), hot flashes (26,27,(29)(30)(31)(33)(34)(35)(36)(37), night sweats (29,31,33,34,37), musculoskeletal pain (25)(26)(27)29,(31)(32)(33)(34)(35)(36)(37)(38), weight gain (26)(27)(28)(29)32,33,37), alopecia (29,32,33,35,37), sexual dysfunctions including loss of sexual interest (27,…”

“…As well as restricting physical capability at work, cognitive side effects of hormone therapy (including difficulty concentrating and memory loss) made it difficult for women to focus on tasks (41). Women also described themselves as more forgetful, which was exacerbated by the interruption of sleep due to hot flushes, night sweats and joint pain (31,34,35,37). This loss of sleep was related to lack of energy for social activities and professional responsibilities (31).…”

“…In addition to debilitating physical side effects, the "disabling" effect (36) of adjuvant HT treatment had severe emotional implications. Women became socially withdrawn and avoided typical daily activities due to fear of embarrassment from unpredictable side effects and losing trust in their own bodies (37). A loss of sexual desire and menopausal symptoms such as hot flashes and vaginal dryness put strain on romantic relationships (33,38), which was distressing for several participants (36,38).…”

“…Side effect severity appears to influence an individual's decision of whether to persist or discontinue HT. Some women coped relatively well with HT side effects (29), whereas some described the treatment as "potentially worse than the disease" and "unbearable" (37). The intensity of side effects was a key factor in the decision to discontinue therapy, as many reached a stage where they felt the advantages of the drugs were outweighed by the burden of side effects (31,33,34,37).…”