scholarly journals Gaps in Knowledge and Understanding of Patients With Metastatic Breast Cancer in Mexico

2020 ◽  
Vol 27 (1) ◽  
pp. 107327482092063
Author(s):  
Cynthia Villarreal-Garza ◽  
Fernanda Mesa-Chavez ◽  
Edna Anakarenn Lopez-Martinez ◽  
Alan Fonseca ◽  
Claudia Pineda ◽  
...  
Keyword(s):  
Breast Cancer ◽  
Decision Making ◽  
Metastatic Breast Cancer ◽  
Information Source ◽  
Metastatic Breast ◽  
Treatment Decision ◽  
Disease Stage ◽  
Cancer Center ◽  
Treatment Decision Making ◽  
High Satisfaction

There is paucity of data regarding the knowledge and understanding of patients with metastatic breast cancer (MBC) about their disease stage and treatment goals. This study assessed these patients’ awareness of MBC incurability, topics reviewed with their oncologist, perceptions of having enough knowledge to participate in treatment decision-making, most helpful information source, and satisfaction with the information they received. For this purpose, 185 patients with MBC who attended follow-up medical appointments at a Mexican referral cancer center completed a survey designed by the Metastatic Breast Cancer Alliance. Clinical data were obtained from medical records. Descriptive statistics were applied, and associations between qualitative and quantitative variables were assessed with χ2 and Mann-Whitney U tests, respectively. Half (52%) of the patients were aware that their disease was incurable, while 31% were not sure, and 17% thought it was curable. Forty percent found it difficult to talk about treatments because they did not understand the options that were available to them. The medical staff was the most helpful information source for 74% of participants, and 64% scored their satisfaction with information ≥9 of 10. A significant association was found between higher satisfaction and knowing that MBC is incurable, as well as being older than 40 years. These results illustrate the significant lack of understanding patients with MBC have regarding their cancer, even when reporting high satisfaction with the provided information, and identify a critical need for improved patient education to enhance their comprehension and promote their participation in decision-making processes, treatment adherence, and, ultimately, outcomes.

The Significance of Patient-Reported Outcomes for Metastatic Breast Cancer Patients

2022 ◽  
Author(s):  
Larissa Elisabeth Hillebrand ◽  
Ulrike Söling ◽  
Norbert Marschner
Keyword(s):  
Breast Cancer ◽  
Decision Making ◽  
Metastatic Breast Cancer ◽  
Cancer Treatment ◽  
Patient Reported Outcomes ◽  
Metastatic Breast ◽  
Treatment Decision ◽  
Breast Cancer Patients ◽  
Treatment Decision Making ◽  
Patient Reported

Background: Breast cancer is still the most common malignancy in women worldwide. Once metastasized, breast cancer treatment primarily aims at reducing symptom burden, thereby trying to maintain and improve a patient´s quality of life (QoL), delaying disease progression, and prolonging survival. Curing the disease is not possible in the palliative setting. To better understand metastatic breast cancer patients, their symptoms and wishes, which are important for treatment-decision making and outcome, patient-reported outcomes (PROs) are of great importance, giving an impression of what really matters to and concerns a patient. Summary: Many advances have been made to implicate PROs in clinical trials, non-interventional studies, registries, and clinical routine care of metastatic breast cancer. For example, large phase III trials like PALOMA-3 (NCT01942135), MONALEESA-7 (NCT02278120), HER2CLIMB (NCT02614794), and KEYNOTE-119 (NCT02555657) trials implemented PROs in their trial design to assess the QoL of their trial patients. Also, non-interventional studies on metastatic breast cancer, like e.g., the NABUCCO study (IOM-02240), and prospective non-interventional, multicenter registries e.g., the tumor registry breast cancer (NCT01351584) or the breast cancer registry platform OPAL (NCT03417115), have implemented PROs to assess QoL during the anti-cancer treatment periods of the patients. Key Message: Using PROs in metastatic breast cancer can support shared treatment-decision making and management of symptoms, eventually leading to an improvement in QoL. Progressively, regulatory authorities take PROs into consideration for the approval of new drugs. Hence, the implication of PROs in cancer treatment, and especially in MBC, is of significant value.

Treatment decision-making and financial toxicity in metastatic breast cancer.

2019 ◽  
Vol 37 (27_suppl) ◽  
pp. 97-97
Author(s):  
Clara Wan ◽  
Courtney Williams ◽  
Stacey A. Ingram ◽  
Valerie Lawhon ◽  
Jennifer Young Pierce ◽  
...  
Keyword(s):  
Breast Cancer ◽  
Decision Making ◽  
Metastatic Breast Cancer ◽  
Metastatic Breast ◽  
Treatment Decision ◽  
Cross Sectional Study ◽  
Financial Toxicity ◽  
Cross Sectional ◽  
Patient Demographic ◽  
Treatment Decision Making

97 Background: Shared decision-making (SDM), a process where patients partner with their physician to incorporate personal preferences into treatment decisions, is a tenet of high-value healthcare. It is unknown if high-value care associated with SDM manifests in the form of decreased out-of-pocket costs. Therefore, this study analyzes the relationship between patient preference for SDM and financial toxicity in metastatic breast cancer (MBC). Methods: This cross-sectional study utilized surveys of women age ≥ 18 with MBC who received care at two academic hospitals in Alabama between 2017 and 2019. SDM preference and financial toxicity were measured using the Control Preferences Scale and the Comprehensive Score for Financial Toxicity (COST) tool (11-item scale from 0-44, with lower scores indicating worse FT), respectively. Patient demographic and clinical data were abstracted from the electronic medical record. Effect sizes were calculated using Cohen’s d or Cramer’s V. Differences in financial toxicity by SDM preference were estimated using mixed models clustered by site and treating medical oncologist. Results: In 79 women with MBC, 41% preferred SDM, 33% preferred provider-driven decision making, and 22% preferred patient-driven decision making. Patients preferring SDM were more often college educated (48% vs. 40%; V = .15), higher income (52% vs. 44%; V = .09), and privately insured (47% vs. 41%; V = .11). Overall median COST score was 23 (interquartile range 16-30), which varied modestly by SDM preference. After adjusting for patient demographic and clinical characteristics, similar financial toxicity levels were found in patients who preferred SDM (COST 22, 95% confidence interval [CI] 19-25), patient-driven decision making (COST 22, 95% CI 18-26), and provider-driven decision making (COST 24, 95% CI 20-27). Conclusions: Similar levels of financial toxicity were found in patients with differing decision–making preferences regarding their MBC treatment, which may be secondary to lack of discussions about cost. Further research is needed to determine if and how financial toxicity is being identified or included within decision-making.

Differences between women’s preferred and actual experience with ‘shared decision-making’: A mixed method study.

2016 ◽  
Vol 34 (26_suppl) ◽  
pp. 34-34
Author(s):  
Deborah Ejem ◽  
J Nicholas Dionne-Odom ◽  
Danny Willis ◽  
Peter Kaufman ◽  
Laura Urquhart ◽  
...  
Keyword(s):  
Decision Making ◽  
Shared Decision Making ◽  
Metastatic Breast ◽  
Treatment Decision ◽  
Cancer Center ◽  
Decision Making Process ◽  
Shared Decision ◽  
Treatment Decision Making ◽  
Actual Experience ◽  
Decision Making Processes

34 Background: Women with metastatic breast cancer (MBC) face numerous treatment and ACP decisions along their illness trajectory. We aimed to explore the treatment and ACP decision-making processes and decision support needs of women with MBC. Methods: Convergent, parallel mixed methods study (9/08-7/09). Sample included women with MBC managed by 3 breast oncologists at the Norris Cotton Cancer Center, Lebanon, NH. Participants completed a semi-structured interview and standardized decision-making instruments (decision control preferences) at study enrollment (T1; n = 22) and when they faced a decision point or 3 months later (T2; n = 19), whichever came first. Results: Participants (n = 22) where all white, averaged 62 years and were mostly married (54%), retired (45%), had a ≥ bachelor’s degree (45%), and had incomes > $40,000 (50%). On the control preferences scale, most women reported a preference for a ‘shared decision’ with clinician (T1 = 14 (64%) vs T2 = 9 (47%)) compared to making the decision themselves (T1 = 6 (27%) vs T2 = 6 (32%)), or delegating the decision to their doctor (T1 = 2 (9%) vs T2 = 4 (21%)). In semi-structured interviews about their actual treatment decision-making experience, women described experiencing a passive or delegated rather than a shared decision-making process. Conversely, women described a much more active ACP decision-making process that was often shared with family rather than their oncologists. Conclusions: Women selected a “shared” process using a validated tool; however their descriptions of the treatment decision-making processes were inconsistent with their actual experience, which was a more passive process in which they followed the oncologists’ treatment suggestions.

Gaps in metastatic breast cancer patient knowledge and understanding in Mexico.

2019 ◽  
Vol 37 (15_suppl) ◽  
pp. 1090-1090
Author(s):  
Cynthia Villarreal-Garza ◽  
Alan Fonseca ◽  
Claudia Pineda ◽  
Ana Platas ◽  
Fernanda Rivera ◽  
...  
Keyword(s):  
Breast Cancer ◽  
Metastatic Breast Cancer ◽  
Medical Information ◽  
Healthcare Providers ◽  
Metastatic Breast ◽  
Disease Stage ◽  
Chi Square ◽  
Additional Information ◽  
High Satisfaction ◽  
Chi Square Test

1090 Background: Among patients with metastatic breast cancer (MBC), there is paucity of data regarding knowledge and understanding about disease stage and goals of treatment. The limited evidence shows that up to 40% of MBC patients ignore their stage and reports inadequate educational resources and support. Aim: To assess MBC patients’ knowledge of their disease and satisfaction with the medical information received. Methods: 185 patients diagnosed with MBC who attended follow-up medical appointments at INCan from June to December 2018 were asked to complete a survey to assess their knowledge on MBC curability, subtype, topics reviewed with the oncologist, need of additional information regarding MBC and satisfaction with the quality of the information they received. Clinical data was obtained from the medical records. Descriptive statistics were applied, and the association between qualitative and quantitative variables was assessed with the Chi square test and the Mann Whitney U test, respectively. This study was supported by the SPARC mBC Challenge. Results: Only 52% of patients knew that their disease is not curable, while 31% were not sure and 17% thought it was curable. 82% ignored their MBC subtype and 81% reported to want more information about their cancer. 64% scored their satisfaction with the provided information ≥9 (out of 10), and 74% stated that their most helpful source of information was the medical staff. A statistically significant association was found between the perception of the impossibility of curing MBC and better patient satisfaction (p = 0.038). Likewise, better patients’ satisfaction was associated with older age (p = 0.002), longer time since initial diagnosis (p = 0.018) and since diagnosis of MBC (p = 0.014). Conclusions: Our results dramatically illustrate the lack of understanding patients have regarding their cancer, even when reporting high satisfaction with the received information, and identify a critical need for improvement of healthcare providers’ communication skills. Directed efforts should be implemented to enhance patients’ comprehension to promote their participation in decision-making processes, adherence and, ultimately, outcomes.

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