Purpose: There is limited research linking data sources to evaluate the multifactorial impacts on the quality of treatment received and financial burden among young women with breast cancer. To address this gap and support future evaluation efforts, we examined the utility of combining patient survey and cancer registry data. Patient and Methods: We administered a survey to women, aged 18-39 years, with breast cancer from four U.S. states. We conducted a systematic response-rate analysis and evaluated differences between racial groups. Survey responses were linked with cancer registry data to assess whether surveys could reliably supplement registry data. Results: A total of 830 women completed the survey for a response rate of 28.4 %. Blacks and Asian/Pacific Islanders were half as likely to respond as white women. Concordance between survey and registry data was high for demographic variables (Cohen's kappa [k]: 0.879 to 0.949), moderate to high for treatments received (k: 0.467 to 0.854), and low for hormone receptor status (k: 0.167 to 0.553). Survey items related to insurance status, employment, and symptoms revealed racial differences. Conclusion: Cancer registry data, supplemented by patient surveys, can provide a broader understanding of the quality of care and financial impacts of breast cancer among young women.

Abstract Research Objective: The objective of this study was to evaluate the insurance, employment, and financial experiences of young (age ≤ 39 years) female breast cancer patients and assess factors associated with any changes in their financial situation. Previous literature has shown that younger women are more likely to be diagnosed with late-stage disease that requires more-intensive treatments, while significant medical expenditures, productivity losses, financial hardship, and changes in employment and work productivity have been found in patients of all ages. Methods: A sample of women who were diagnosed with breast cancer between the ages of 18 and 39 years and residing in the states of California, Florida, Georgia, and North Carolina were identified. The sample included women who were (1) diagnosed with ductal carcinoma in situ (D05.90; 8500/2) or invasive breast cancer (C50; 8500/3) between January 2013 and December 2014; (2) between the ages of 18 and 39 years at the time of diagnosis; and (3) alive at the time of data extraction. We contacted 3,659 women by mail; 2,927 were alive with deliverable addresses. Of those, 830 women returned completed surveys, yielding a response rate of 28.4%. The survey instrument included 66 questions on demographics, insurance status, employment history, out-of-pocket cost, and overall financial well-being. Multivariate analysis was used to identify factors associated with financial decline. Principal Findings: About half of the women (47.4%) reported that treatment expenditures were higher than anticipated, and almost two-thirds (65.3%) had not discussed treatment costs with their care team. Almost a third of the patients (31.8%) reported treatment nonadherence due to cost. Factors associated with not receiving recommended care included very young age (<35 years) at diagnosis, self-insurance, the presence of comorbid conditions, and a late-stage diagnosis. Conclusions: Young female breast cancer patients experienced considerable financial burden regardless of insurance coverage. Most respondents made employment decisions that would allow them to keep their health insurance coverage. Knowledge about the financial consequences of breast cancer can help patients factor cost and employment into treatment decisions. Implications for Policy or Practice: This study highlights the burdens that many young women with breast cancer face, regardless of employment or insurance status, raising the possibility of target policy intervention. The strengths of this study include a unique focus on young breast cancer patients, identification of patients from population-based cancer registries, and the utilization of multifaceted insurance/financial indicators. Citation Format: Florence Tangka, Sujha Subramanian, Madeleine Jones, Patrick Edwards, Tim Flanigan, Jenya Kaganova, Kevin Smith, Cheryll Thomas, Nikki Hawkins, Temeika Fairley, Gery Guy, Juan Rodriguez. Insurance coverage, employment status, and financial wellbeing of young women diagnosed with breast cancer [abstract]. In: Proceedings of the 2020 San Antonio Breast Cancer Virtual Symposium; 2020 Dec 8-11; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2021;81(4 Suppl):Abstract nr PS7-45.

Purpose Breast cancer is the leading cause of cancer-related deaths in women younger than 40 years. We aim to evaluate cost as a barrier to care among female breast cancer patients diagnosed between 18 to 39 years. Methods In early 2017, we distributed a survey to women diagnosed with breast cancer between the ages of 18 and 39 years, as identified by the central cancer registries of California, Georgia, North Carolina, and Florida. We used multivariable statistics to explore cost-related barriers to receiving breast cancer care for the 830 women that completed the survey. Results About half of the women (47.4%) reported spending more on breast cancer care than expected, and almost two-thirds (65.3%) had not discussed costs with their care team. A third of the patients (31.8%) indicated forgoing care due to cost. Factors associated with not receiving anticipated care due to cost included age less than35 years at diagnosis, self-insurance, comorbid conditions, and late-stage diagnosis. Conclusion Previous studies using breast cancer registry data have not included detailed insurance information and care received by young women. Young women with breast cancer frequently forgo breast cancer care due to cost. Our results highlight the potential for policies that facilitate optimal care for young breast cancer patients which could include the provision of comprehensive insurance coverage.

Background: The economic cost of breast cancer is a major personal and public health problem in the United States. This study aims to evaluate the insurance, employment, and financial experiences of young female breast cancer survivors and to assess factors associated with financial decline. Methods: We recruited 830 women under 40 years of age diagnosed with breast cancer between January 2013 and December 2014. The study population was identified through California, Florida, Georgia, and North Carolina population-based cancer registries. The cross-sectional survey was fielded in 2017 and included questions on demographics, insurance, employment, out-of-pocket costs, and financial well-being. We present descriptive statistics and multivariate analysis to assess factors associated with financial decline. Results: Although 92.5% of the respondents were continuously insured over the past 12 months, 9.5% paid a “higher price than expected” for coverage. Common concerns among the 73.4% of respondents who were employed at diagnosis included increased paid (55.1%) or unpaid (47.3%) time off, suffering job performance (23.2%), and staying at (30.2%) or avoiding changing (23.5%) jobs for health insurance purposes. Overall, 47.0% experienced financial decline due to treatment-related costs. Patients with some college education, multiple comorbidities, late stage diagnoses, and self-funded insurance were most vulnerable. Conclusions: The breast cancer diagnosis created financial hardship for half the respondents and led to myriad challenges in maintaining employment. Employment decisions were heavily influenced by the need to maintain health insurance coverage. Impact: This study finds that a breast cancer diagnosis in young women can result in employment disruption and financial decline.

The economic burden of breast cancer for women under 50 in the United States remains largely unexplored, in part because young women make up a small proportion of breast cancer cases overall. To address this knowledge gap, we conducted a web-based survey to compare data from breast cancer survivors 18–39 years of age at first diagnosis and 40–49 years of age at first diagnosis. We administered a survey to a national convenience sample of 416 women who were 18–49 years of age at the time of their breast cancer diagnosis. We analyzed factors associated with financial decline using multivariate regression. Survivors 18–39 years of age at first diagnosis were more likely to report Stage II–IV breast cancer (P<0.01). They also quit their jobs more often (14.6%) than older survivors (4.4%; P<0.01) and faced more job performance issues (55.7% and 42.8%, respectively; P=0.02). For respondents in both groups, financial decline was more likely if the survivor had at least one comorbid condition (odds ratios: 2.36–3.21) or was diagnosed at Stage II–IV breast cancer (odds ratios: 2.04–3.51).

OBJECTIVES: We evaluated whether primary care practices in the Medicare Multi-Payer Advanced Primary Care Practice (MAPCP) Demonstration improved the quality of care and patient outcomes for beneficiaries. STUDY DESIGN: For our quantitative analyses, we employed a pre-post study design with a comparison group using enrollment data, Medicare fee-for-service claims data, and Medicaid managed care and fee-for-service claims data, covering the period 2 to 4 years before Medicare joined the state patient-centered medical home initiatives through December 2014. We used difference-in-differences (DID) regression analysis to compare quality and outcomes in the period before and after the demonstration began. METHODS: We examined the extent to which MAPCP and comparison group beneficiaries received up to 11 process and preventive care measures, as well as 4 measures of potentially avoidable hospitalizations to assess patient outcomes. RESULTS: Analyses of Medicare and Medicaid data did not consistently reflect the positive impacts intended by the demonstration. Our descriptive and DID analysis found an inconsistent pattern among the process-of-care results, and there were some significant unfavorable associations between participation in MAPCP and avoidable hospitalizations. CONCLUSIONS: Our analyses showed few statistically significant, favorable impacts on quality metrics among Medicare or Medicaid beneficiaries receiving care from MAPCP practices.

This evaluation report describes the implementation and impacts of a program intended to improve health status and slow the growth of health care expenditures among older adults living in affordable housing properties. The Support and Services at Home (SASH) program connects participants with community-based services and promotes coordination of health care. In July 2011, the SASH program was launched in Vermont; and by June 2015, the latest date for this analysis, the program had expanded to include 54 panels and 4,741 participants across the state who had spent at least 3 months in the program. Our analysis combines findings from interviews with SASH staff members and key stakeholders, a survey of SASH participants, and an analysis of Medicare claims data. The SASH program faced challenges in expanding beyond the affordable housing properties and into the community. Highlighted successes included the partnerships formed with other organizations and the training program for SASH staff. Another notable success reported was the program’s ability to help participants remain in their homes, in terms of both allowing participants to age in place as their health and functional needs increase and helping participants avoid eviction. Self-reported health status and functioning were higher for SASH participants relative to the survey comparison group, and SASH participants reported fewer problems managing multiple medications. Overall, we do not find that the SASH program had a significant impact on the growth of Medicare expenditures. However, among participants enrolled in SASH panels established before April 2012 (early panels, representing 40% of SASH participants with Medicare living in affordable housing properties), growth in annual Medicare expenditures was slower by an estimated $1,227 per-beneficiary per year. These same beneficiaries in the early panels also had lower rates of hospitalization and slower rates of growth for hospital and specialty physician costs.