Perceptions of Endocrine Therapy in African-American Breast Cancer Survivors: Mixed Methods Study.
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ABSTRACT: Background
Although the incidence of breast cancer is lower in African-American women than in White women, African-American women have a decreased survival rate. The difference in survival rate may stem from poor endocrine therapy adherence, which increases breast cancer recurrence. Therefore, accessible and culturally sensitive interventions to increase endocrine therapy adherence are necessary.Objective
The purpose of this concurrent convergent mixed methods study was to provide further data to guide the development of the proposed culturally sensitive mHealth app, STORY+ for African-American women with breast cancer.Methods
We recruited 20 African-American women diagnosed with estrogen-positive breast cancer and currently prescribed endocrine therapy. We used a concurrent convergent data collection method to (1) assess the use of smartphones and computers related to health care and (2) identify foundational aspects to support endocrine therapy adherence for incorporation in a mobile health app.Results
Overwhelmingly, the participants preferred using smartphones to using computers for health care. Communicating with health care providers and pharmacies was the most frequent health care use of smartphones, followed by exercise tracking, and accessing the patient portal. We identified 4 aspects of adherence to endocrine therapy and smartphone use for incorporation in app development. The factors that emerged from the integrated qualitative and quantitative data were (1) willingness to use, (2) side effects, (3) social connection, and (4) beliefs about endocrine therapy.Conclusions
Further research is needed to develop a culturally sensitive app for African-American women with breast cancer to improve adherence to endocrine therapy. Our work strongly suggests that this population would use the app to connect with other African-American breast cancer survivors and manage endocrine therapy.
SUBMITTER: Donevant S
PROVIDER: S-EPMC8235283 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:Adjuvant endocrine therapy (AET) has been shown to improve survival in hormone receptor-positive breast cancer survivors, but as many as half do not complete recommended treatment. Management of medication-related side effects and engagement with providers are two potentially modifiable factors, but their associations with adherence are not well understood. The aims were to build on survey results to qualitatively explore survivors' experiences with prescribed AET to (a) describe appraisal and management of AET side effects and (b) deconstruct decisions to initiate, discontinue, or maintain AET.
.The authors used a mixed-methods explanatory sequence research design with a qualitative emphasis.
.Survivors were recruited from a clinical cancer registry maintained at the University of Texas Southwestern Medical Center, which includes the Harold C. Simmons Comprehensive Cancer Center (National Cancer Institute-designated), in Dallas.
.452 survivors completed a survey, and 30 took part in telephone interviews.
.Qualitative methods were used in which the authors recorded and transcribed interviews for analysis and used open coding to reduce data into themes.
.Among adherent survivors, the themes of tolerance of side effects and perseverance were strong. Nonadherent survivors expressed more difficulty managing side effects and perceived fewer benefits when side effects were bothersome. The most common side effects mentioned by all survivors were menopausal symptoms and joint pain; less common side effects were cognitive decline and cardiac distress. Some sought advice from their oncology team. Nonadherent survivors appeared initially motivated to maintain AET but identified a tolerance limit for side effects after which a provider's recommendation was less influential in their decision to maintain or discontinue AET.
.This study elucidated adherence as a complex continuum of behaviors, appraisals, and decision points. These insights may be particularly useful in counseling survivors taking AET and promoting timely delivery of clinical interventions to enhance adherence.
.Nurses should be involved in the planning and implementation of clinical interventions to manage side effects and other barriers to AET adherence.
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Project description:African Americans have a disproportionately higher risk of chronic conditions such as cardiovascular disease (CVD), type 2 diabetes, and hypertension than other ethnic or racial groups. Data regarding CVD-related perceptions and beliefs among African Americans are limited, particularly in the Southwest US. Assessment of current views regarding health and health behaviors is needed to tailor interventions to meet the unique needs of specific populations. We sought to examine knowledge, attitudes, and perceptions of African Americans living in Arizona toward CVD and etiological factors associated with health behaviors and chronic disease development to inform state health agency program development. Transcripts from 14 focus groups (n = 103) were analyzed using Grounded Theory for perceived disease risk, knowledge of CVD risk factors, nutrition, preventative behaviors, and barriers and motivators to behavior change. Participants identified CVD, stroke, and diabetes as leading health concerns among African-Americans but were less certain about the physiological consequences of these diseases. Diet, stress, low physical activity, family history, hypertension, and stroke were described as key CVD risk factors, but overweight and obesity were mentioned rarely. Participants described low socio-economic status and limited access to healthy foods as contributors to disease risk. Focus group members were open to modifying health behaviors if changes incorporated their input and were culturally acceptable. Respondents were 41% male and 59% female with a mean age of 46 years. This study provides insight into CVD and associated disease-related perceptions, knowledge, and attitudes among African Americans in the Southwest and recommendations for interventions to reduce CVD risk.
| S-EPMC6265893 | biostudies-literature
Project description:PurposeAfrican American breast cancer survivors (AABCS) have a lower survival rate across all disease stages (79 %) compared with White survivors (92 %) and often have more aggressive forms of breast cancer requiring multimodality treatment, so they could experience a larger burden of post-treatment quality of life (QOL) problems. This paper reports a comprehensive assessment of the number, severity, and domains of problems faced by AABCS within 5 years after treatment completion and identifies subgroups at risk for these problems.MethodsA population-based random sample was obtained from the Pennsylvania Cancer Registry of African American females over 18 years of age who completed primary treatment for breast cancer in the past 5 years. A mailed survey was used to document survivorship problems.ResultsTwo hundred ninety-seven AABCS completed the survey. The median number of survivor problems reported was 15. Exploratory factor analysis of the problem scale revealed four domains: emotional problems, physical problems, lack of resources, and sexuality problems. Across problem domains, younger age, more comorbid conditions, and greater medical mistrust were risk factors for more severe problems.ConclusionsThe results demonstrated that AABCS experienced significant problem burden in the early years after diagnosis and treatment. In addition to emotional and physical problem domains that were documented in previous research, two problem domains unique to AABCS included lack of resources and sexuality concerns. At risk groups should be targeted for intervention. The study results reported in this manuscript will inform future research to address problems of AABCS as they make the transition from cancer patient to cancer survivor.
| S-EPMC5539961 | biostudies-literature
Project description: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.
| S-EPMC6042363 | biostudies-literature
Project description:PurposeOral anti-cancer medications are increasingly common and endocrine therapies represent the most common oral anti-cancer medications in breast cancer. Adjuvant endocrine therapies reduce the likelihood of recurrence and mortality in the approximately 80% of women diagnosed with hormone-receptor-positive breast cancer, thus rendering adherence essential. Real-time medication adherence monitors, such as the Wisepill electronic pillbox, transmit adherence data remotely, allowing for early intervention for non-adherence. However, their feasibility and acceptability have yet to be examined among breast cancer survivors taking endocrine therapies.MethodsThis study presents quantitative patient-report and technical support data and qualitative patient acceptability data on Wisepill, a common real-time adherence monitor, among 88 breast cancer survivors prescribed adjuvant endocrine therapy.ResultsThis mixed-methods study of a common real-time adherence monitor, among the first in breast cancer survivors taking adjuvant endocrine therapy, demonstrates its technical feasibility and patient acceptability.ConclusionThe use of wireless medication monitors that transmit real-time adherence data is uniquely promising for maximizing the benefits of adjuvant endocrine therapy by allowing for continuous tracking, ongoing communication with oncologic or research teams, and early intervention. This study demonstrates the feasibility and patient acceptability of one such real-time adherence monitor.
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Project description:BACKGROUND:Achieving adequate levels of physical activity (PA) is especially important for cancer survivors to mitigate the side effects of cancer and its treatment as well as for other health benefits. Electronic health (eHealth)-based PA interventions may offer feasible alternatives to traditionally delivered programs and optimize physical recovery after a cancer diagnosis, but perspectives of cancer survivors on this new delivery medium have not been extensively explored. OBJECTIVE:The overall aim was to explore participants' perspectives of eHealth-enabled PA interventions to inform the design of a future intervention among cancer survivors. METHODS:The study took place in a designated cancer center in Dublin, Ireland. A preceding questionnaire-based study was conducted primarily to establish interest in participating in subsequent eHealth-based studies. A follow-on focus group study was conducted to explore the concept of eHealth-based PA interventions for cancer survivors. The data were analyzed using thematic analysis. RESULTS:The questionnaire-based study (N=102) indicated that participants had a high level of interest in participating in follow-on eHealth-based studies. The focus group study (n=23) indicated that, despite some trepidation, overall positivity was expressed by participants toward the concept of eHealth-based PA interventions. Four themes were generated: (1) Health impact, including PA as a barrier and as a motivating factor, (2) Education needs, which emphasized the need for integrated information about PA and to increase technical literacy, (3) Goal setting, which should be integrated within the technical specification as a motivating factor, and (4) Support needs, as well as the importance of personalized human interaction, in tandem with technology. CONCLUSIONS:Qualitative research at the pretrial phase adds value to the design of a complex intervention and is especially useful in an area such as eHealth. The findings highlighted an interest in participating in eHealth-focused research as well as barriers, training needs, and key design features that can be applied to optimize the design of future eHealth-based PA interventions in cancer.
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Project description:BackgroundFor women with hormone receptor positive breast cancer, long-term endocrine therapy (ET) can greatly reduce the risk of recurrence, yet adherence is low- particularly among traditionally underserved populations.MethodsThe Carolina Breast Cancer Study oversampled Black and young women (<50 years of age). Participants answered an ET-specific medication adherence questionnaire assessing reasons for non-adherence. We used principal factor analysis to identify latent factors describing ET non-adherence. We then performed multivariable regression to determine clinical and demographic characteristics associated with each ET non-adherence factor.Results1,231 women were included in analysis, 59% reported at least one barrier to ET adherence. We identified three latent factors which we defined as: habit - challenges developing medication-taking behavior; tradeoffs - high perceived side effect burden and medication safety concerns; and resource barriers - challenges related to cost or accessibility. Older age (50+) was associated with less reporting of habit (Adjusted Risk Ratio (aRR) 0.54[95% CI: 0.43-0.69] and resource barriers (aRR 0.66[0.43-0.997]), but was not associated with tradeoff barriers. Medicaid-insured women were more likely than privately-insured to report tradeoff (aRR:1.53 [1.10-2.13]) or resource barriers (aRR:4.43[2.49-6.57]). Black race was associated with increased reporting of all factors (habit: aRR 1.29[1.09-1.53]; tradeoffs: 1.32[1.09-1.60], resources: 1.65[1.18-2.30]).ConclusionBarriers to ET adherence were described by three distinct factors, and strongly associated with sociodemographic characteristics. Barriers to ET adherence appear inadequately addressed for younger, Black, and publicly-insured breast cancer survivors. These findings underscore the importance of developing multi-faceted, patient-centered interventions that address a diverse range of barriers to ET adherence.
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Project description:Purpose African American women with breast cancer have higher cancer-specific and overall mortality rates. Obesity is common among African American women and contributes to breast cancer progression and numerous chronic conditions. Weight loss interventions among breast cancer survivors positively affect weight, behavior, biomarkers, and psychosocial outcomes, yet few target African Americans. This article examines the effects of Moving Forward, a weight loss intervention for African American breast cancer survivors (AABCS) on weight, body composition, and behavior. Patients and Methods Early-stage (I-III) AABCS were randomly assigned to a 6-month interventionist-guided (n = 125) or self-guided (n = 121) weight loss program supporting behavioral changes to promote a 5% weight loss. Anthropometric, body composition, and behavioral data were collected at baseline, postintervention (6 months), and follow-up (12 months). Descriptive statistics and mixed models analyses assessed differences between groups over time. Results Mean (± standard deviation) age, and body mass index were 57.5 (± 10.1) years and 36.1 (± 6.2) kg/m2, respectively, and 82% had stage I or II breast cancer. Both groups lost weight. Mean and percentage of weight loss were greater in the guided versus self-guided group (at 6 months: 3.5 kg v 1.3kg; P < .001; 3.6% v 1.4%; P < .001, respectively; at 12 months: 2.7 kg v 1.6 kg; P < .05; 2.6% v 1.6%; P < .05, respectively); 44% in the guided group and 19% in the self-guided group met the 5% goal. Body composition and behavioral changes were also greater in the interventionist-guided group at both time points. Conclusion The study supports the efficacy of a community-based interventionist-guided weight loss program targeting AABCS. Although mean weight loss did not reach the targeted 5%, the mean loss of > 3% at 6 months is associated with improved health outcomes. Affordable, accessible health promotion programs represent a critical resource for AABCS.
| S-EPMC5562172 | biostudies-literature
Project description:PURPOSE:The American Cancer Society (ACS) and the American Institute for Cancer Research (AICR) each created dietary and physical activity guidelines to improve cancer survivorship. Despite African American breast cancer survivors (AABCS) having the lowest survival rates of any racial or ethnic group, limited information exists on their adherence to cancer-specific lifestyle recommendations. The study's purpose was to measure adherence to ACS/AICR dietary recommendations in AABCS. METHODS:Two hundred ten AABCS enrolled in the Moving Forward intervention trial, a randomized, community-based, 6-month weight loss study, were assessed for socio-demographics, dietary intake (via food frequency questionnaire), and related health factors at baseline. We operationalized the dietary recommendations put forth by ACS/AICR and created component and total adherence index scores. Descriptive statistics were used to calculate the proportion of women who met recommendations. Student's t test and ?2 tests were used to compare participant characteristics by median adherence scores. RESULTS:The mean total ACS/AICR score was 12.7?±?2.5 out of 21 points (median, 13; range, 5 to 21). Over 90% were moderately or completely adherent to limiting alcohol and red & processed meat consumption, but the majority failed to meet the other recommendations to eat whole grains, legumes, fruits, vegetables, and avoid added sugars. Women with total scores below the median were younger, with higher BMI, had fewer years of education, and lower income levels. IMPLICATIONS FOR CANCER SURVIVORS:The present study extends the literature on AABCS adherence to cancer survivor-specific dietary guidelines. Findings will inform future dietary lifestyle interventions in this population.
| S-EPMC6612676 | biostudies-literature
Project description:BackgroundThe diagnosis and treatment of breast cancer can have profound effects on a young woman's family planning and fertility, particularly among women with hormone receptor-positive breast cancer.MethodsThe Young Women's Breast Cancer Study was a multicenter cohort of women aged 40 years or younger and newly diagnosed with breast cancer from 2006 to 2016. Surveys included assessments of fertility concerns, endocrine therapy (ET) preferences, and use. Characteristics were compared between women who reported that fertility concerns affected ET decisions and those who did not. Logistic regression was used to identify factors associated with having an ET decision affected by fertility concerns.ResultsOf 643 eligible women with hormone receptor-positive, stage I to III breast cancer, one-third (213 of 643) indicated that fertility concerns affected ET decisions. In a multivariable analysis, only parity at diagnosis was significantly associated with fertility concerns affecting ET decisions (odds ratio for nulliparous vs ≥2 children, 6.96; 95% confidence interval, 4.09-11.83; odds ratio for 1 vs ≥2 children, 5.30; 95% confidence interval, 3.03-9.87). Noninitiation/nonpersistence was higher among women with fertility concerns versus those without fertility concerns (40% vs 20%; P < .0001). Among women with fertility-related ET concerns, 7% (15 of 213) did not initiate ET, and 33% (70 of 213) were nonpersistent over 5 years of follow-up. Of these women, 66% (56 of 85) reported 1 or more pregnancies or pregnancy attempts; 27% (15 of 56) had resumed ET at the last available follow-up through 5 years.ConclusionsConcern about fertility is a contributor to adjuvant ET decisions among a substantial proportion of young breast cancer survivors. Ensuring family planning is addressed in the setting of ET recommendations should be a priority throughout the cancer care continuum.
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