scholarly journals Patient Perceptions of Changes in Breast Cancer Care and Well-Being During COVID-19: A Mixed Methods Study

Author(s):  
Abigail Ludwigson ◽  
Victoria Huynh ◽  
Sara Myers ◽  
Karen Hampanda ◽  
Nicole Christian ◽  
...  
2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Jackie Bonilla ◽  
Cristian Escalera ◽  
Jasmine Santoyo-Olsson ◽  
Cathy Samayoa ◽  
Carmen Ortiz ◽  
...  

Abstract Background Compared to their white counterparts, Latina breast cancer survivors experience poorer quality of care and worse health-related quality of life. Limited English proficiency (LEP) and patient engagement in cancer care could help explain these disparities. We assessed associations between LEP status and difficulty engaging with physicians, with self-reported quality of breast cancer care and health-related quality of life (physical and emotional well-being) among rural and urban Latina breast cancer survivors. Methods Analyses used cross-sectional baseline survey data from two studies that tested a stress management program among rural and urban Latina breast cancer survivors in California. Medical information was collected through medical records review. Linear regression models examined bivariate and multivariable associations of LEP status (yes or no), difficulty engaging with doctors (asking questions and participating in treatment decisions) (1–4; higher score = greater difficulty), and rural versus urban site, with three outcomes: (1) quality of breast cancer care and information; (2) physical well-being; and (3) and emotional well-being, controlling for demographic and medical factors. Results The total sample included 304 women (151 from urban and 153 from rural sites). Mean age was 52.7 years (SD 10.9). Most were limited English proficient (84.5%) and had less than a high school education (67.8%). Difficulty engaging with doctors was inversely associated with patient ratings of quality of breast cancer care and information (B = − 0.190, p = 0.014), emotional well-being (B = − 1.866, p < 0.001), and physical well-being (B = − 1.272, p = 0.002), controlling for demographic and treatment factors. LEP (vs. not; B = 1.987, p = 0.040) was independently associated with physical well-being only. Rural/urban status was not related independently to any outcome. Conclusions Rural and urban Latina breast cancer survivors who report greater difficulty engaging with physicians experienced worse quality of breast cancer care and health-related quality of life. Promoting greater engagement of Latina breast cancer survivors in cancer care and providing medical interpreters when needed could improve patient outcomes among this vulnerable group. Trial registration: http://www.ClinicalTrials.gov identifier NCT02931552 and NCT01383174.


2021 ◽  
Author(s):  
Jackie Bonilla ◽  
Cristian Escalera ◽  
Jasmine Santoyo-Olsson ◽  
Cathy Samayoa ◽  
Carmen Ortiz ◽  
...  

Abstract Background: Compared to their white counterparts, Latina breast cancer survivors experience poorer quality of care and worse health-related quality of life. Limited English proficiency (LEP) and patient engagement in cancer care could help explain these disparities. We assessed associations between LEP status and difficulty engaging with physicians, with self-reported quality of breast cancer care and health-related quality of life (physical and emotional well-being) among rural and urban Latina breast cancer survivors. Methods: Analyses used cross-sectional baseline survey data from two studies that tested a stress management program among rural and urban Latina breast cancer survivors in California. Medical information was collected through medical records review. Linear regression models examined bivariate and multivariable associations of LEP status (yes or no), difficulty engaging with doctors (asking questions and participating in treatment decisions) (1-4; higher score=greater difficulty), and rural versus urban site, with three outcomes: 1) quality of breast cancer care and information; 2) physical well-being; and 3) and emotional well-being, controlling for demographic and medical factors. Results: The total sample included 304 women (151 from urban and 153 from rural sites). Mean age was 52.7 years (SD 10.9). Most were limited English proficient (84.5%) and had less than a high school education (67.8%). Difficulty engaging with doctors was inversely associated with patient ratings of quality of breast cancer care and information (B = - 0.190, p=0.014), emotional well-being (B = -1.866, p <0.0001), and physical well-being (B = -1.272, p = 0.002), controlling for demographic and treatment factors. LEP (vs. not; B = 1.987, p = 0.040) was independently associated with physical well-being only. Rural/urban status was not related independently to any outcome.Conclusions: Rural and urban Latina breast cancer survivors who report greater difficulty engaging with physicians experienced worse quality of breast cancer care and health-related quality of life. Promoting greater engagement of Latina breast cancer survivors in cancer care and providing medical interpreters when needed could improve patient outcomes among this vulnerable group.Trial registration: http://www.ClinicalTrials.gov identifier NCT02931552 and NCT01383174.


2021 ◽  
Vol 39 (15_suppl) ◽  
pp. e18827-e18827
Author(s):  
Sofia Sánchez-Román ◽  
Yanin Chavarri Guerra ◽  
Ingrid Vargas-Huicochea ◽  
Asunción Alvarez del Río ◽  
Pilar Bernal Pérez ◽  
...  

e18827 Background: FT associated with cancer care damages patients’ quality of life and increases symptom burden. Developing countries lack public insurance programs to protect the growing population of older adults with cancer from catastrophic expenses. In this cross-sectional mixed methods study, we evaluated FT among a Mexican older adults with cancer and their relatives. Methods: We included patients age ≥65 with the 10 most common tumors in Mexico according to GLOBOCAN and within 3-24 months (mo) of diagnosis at two public hospitals in Mexico City, and their relatives. For the quantitative component, patients and relatives answered the CFPB Financial Well-Being Scale (range 0-100 points, lower scores represent worse financial well-being), the COST-FACIT cancer-related financial burden scale (range 0-44 points, scores < 26 represent FT), and a 3 mo self-reported expense diary. For the qualitative component, focused interviews were used to describe the individual experience of selected patients and their relatives. Results: 96 patients (mean age 72.1 years, SD 6.1; 59.4% male) were included for the quantitative component. The most common tumor types were prostate (33%), colon (14%), breast (14%), and lung (10%); 45% had stage IV disease; and a third had no healthcare coverage. Mean COST-FACIT score was 16.4 (95% CI 14.8-17.9), with 9% reporting no FT (score ≥26), 52% mild FT (14-25), 39% moderate FT (1-13), and 0% severe FT (0). Mean CFPB Financial Well-Being Scale score was 45.2 (95% CI 43.3-47.1); with 78% reporting poor financial well-being (score ≤50). Median expenses in the previous 3 mo were $3225 USD ($23-$55,000), of which most were associated with purchasing medications, including chemotherapy (median $735, $0-$13425). Average monthly patient income was only $123/mo ($0-$2000). Focused interviews were done for 25 patient-relative dyads. While most had no debt before cancer, a significant proportion of patients and their relatives (mainly their sons, daughters, or siblings) acquired multiple debts from banks, retail stores offering high-interest sub-prime credits, and/or relatives to pay for cancer-related costs . A common theme related to FT was the long interval (up to 1 year) between first symptoms and diagnosis, during which they paid for several private consultations and diagnostic tests. In many cases patients had to travel up to 180 miles to find cancer care. Conclusions: 91% of older Mexican adults with cancer had FT, compared to 18% reported by older patients with advanced cancer in the USA. Likewise, 78% had scores ≤50 in CFPB, in contrast with 24% in the US. Our results show high out-of-pocket expenses, limited healthcare coverage, and a deleterious effect of FT on the economic stability, productivity, and income of entire families and generations. Financial protection schemes are needed to protect older adults with cancer living in developing countries.


2021 ◽  
Author(s):  
Isabel Alvarado‐Cabrero ◽  
Franco Doimi ◽  
Virginia Ortega ◽  
Jurema Telles Oliveira Lima ◽  
Rubén Torres ◽  
...  

2021 ◽  
pp. 000313482096628
Author(s):  
Erica Choe ◽  
Hayoung Park ◽  
Ma’at Hembrick ◽  
Christine Dauphine ◽  
Junko Ozao-Choy

Background While prior studies have shown the apparent health disparities in breast cancer diagnosis and treatment, there is a gap in knowledge with respect to access to breast cancer care among minority women. Methods We performed a retrospective analysis of patients with newly diagnosed breast cancer from 2014 to 2016 to evaluate how patients presented and accessed cancer care services in our urban safety net hospital. Patient demographics, cancer stage, history of breast cancer screening, and process of referral to cancer care were collected and analyzed. Results Of the 202 patients identified, 61 (30%) patients were younger than the age of 50 and 75 (63%) were of racial minority background. Only 39% of patients with a new breast cancer were diagnosed on screening mammogram. Women younger than the age of 50 ( P < .001) and minority women ( P < .001) were significantly less likely to have had any prior screening mammograms. Furthermore, in patients who met the screening guideline age, more than half did not have prior screening mammograms. Discussion Future research should explore how to improve breast cancer screening rates within our county patient population and the potential need for revision of screening guidelines for minority patients.


2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Manraj N. Kaur ◽  
Anne F. Klassen ◽  
Feng Xie ◽  
Louise Bordeleau ◽  
Toni Zhong ◽  
...  

Abstract Background Generic preference-based measures (PBM), though commonly used, may not be optimal for use in economic evaluations of breast cancer interventions. No breast cancer-specific PBM currently exists, and the generic PBMs fail to capture the unique concerns of women with breast cancer (e.g., body image, appearance, treatment-specific adverse effects). Hence, the objective of this study was to develop a breast cancer-specific PBM, the BREAST-Q Utility module. Methods Women diagnosed with breast cancer (stage 0–4, any treatment) were recruited from two tertiary hospitals in Canada and one in the US. The study followed an exploratory sequential mixed methods approach, whereby semi-structured interviews were conducted and at the end of the interview, participants were asked to list their top five health-related quality of life (HRQOL) concerns and to rate the importance of each item on the BREAST-Q. Interviews were audio-recorded, transcribed verbatim, and coded. Constant comparison was used to refine the codes and develop a conceptual framework. Qualitative and quantitative data were triangulated to develop the content of the Utility module  that was refined through 2 rounds of cognitive debriefing interviews with women diagnosed with breast cancer and feedback from experts. Results Interviews were conducted with 57 women aged 55 ± 10 years. A conceptual framework was developed from 3948 unique codes specific to breasts, arms, abdomen, and cancer experience. Five top-level domains were HRQOL (i.e., physical, psychological, social, and sexual well-being) and appearance. Data from the interviews, top 5 HRQOL concerns, and BREAST-Q item ratings were used to inform dimensions for inclusion in the Utility module. Feedback from women with breast cancer (N = 9) and a multidisciplinary group of experts (N = 27) was used to refine the module. The field-test version of the HSCS consists of 10 unique dimensions. Each dimension is measured with 1 or 2 candidate items that have 4–5 response levels each. Conclusion The field-test version of the BREAST-Q Utility module was derived from extensive patient and expert input. This comprehensive approach ensured that the content of the Utility module is relevant, comprehensive, and includes concerns that matter the most to women with breast cancer.


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