Much has been written about the relationship between a person’s high medical expenses and his or her likelihood of filing for bankruptcy, but the relationship between receiving a cancer diagnosis and filing for bankruptcy is less well understood. We estimated the incidence and relative risk of bankruptcy for people age twenty-one or older diagnosed with cancer compared to people the same age without cancer by conducting a retrospective cohort analysis that used a variety of medical, personal, legal, and bankruptcy sources covering the Western District of Washington State in US Bankruptcy Court for the period 1995–2009. We found that cancer patients were 2.65 times more likely to go bankrupt than people without cancer. Younger cancer patients had 2–5 times higher rates of bankruptcy compared to cancer patients age sixty-five or older, indicating that Medicare insurance and Social Security may mitigate bankruptcy risk for the older group. The findings suggest that employers and governments may have a policy role to play in creating programs and incentives that could help people cover expenses in the first year following a cancer diagnosis.
Implementing an oncology financial navigation program is feasible, provides concrete assistance in navigating the cost of care, and mitigates anxiety about costs in a subset of patients. Future work will focus on measuring the program's impact on financial and clinical outcomes.
The prevalence of potentially preventable ED visits was generally high, but varied depending on the diagnosis code fields and the group of codes considered. Future research is needed to understand the complex landscape of potentially preventable ED visits and measures to improve value in cancer care delivery.
For the past two decades, the National Cancer Institute (NCI) has supported the involvement of patient advocates in both internal advisory activities and funded research projects to provide a patient perspective. Implementation of the inclusion of patient advocates has varied considerably, with inconsistent involvement of patient advocates in key phases of research such as concept development. Despite this, there is agreement that patient advocates have improved the patient focus of many cancer research studies. This commentary describes our experience designing and pilot testing a new framework for patient engagement at SWOG, one of the largest cancer clinical trial network groups in the United States and one of the four adult groups in the NCI's National Clinical Trials Network (NCTN). Our goal is to provide a roadmap for other clinical trial groups that are interested in bringing the patient voice more directly into clinical trial conception and development. We developed a structured process to engage patient advocates more effectively in the development of cancer clinical trials and piloted the process in four SWOG research committees, including implementation of a new Patient Advocate Executive Review Form that systematically captures patient advocates' input at the concept stage. Based on the positive feedback to our approach, we are now developing training and evaluation metrics to support meaningful and consistent patient engagement across the SWOG clinical trial life cycle. Ultimately, the benefits of more patient-centered cancer trials will be measured in the usefulness, relevance, and speed of study results to patients, caregivers, and clinicians.
Adherence to the ASCO/ABIM CW measures varies widely, as does the cost implication of nonadherence. A structured approach to evaluating adherence and cost impact is needed before developing programs aimed at improving adherence to the ASCO/ABIM CW measures.
Background
The Fred Hutchinson Cancer Research Center has engaged an External Stakeholder Advisory Group (ESAG) in the planning and implementation of the TrACER Study (S1415CD), a five-year pragmatic clinical trial assessing the effectiveness of a guideline-based colony stimulating factor standing order intervention. The trial is being conducted by SWOG through the National Cancer Institute Community Oncology Research Program in 45 clinics. The ESAG includes ten patient partners, two payers, two pharmacists, two guideline experts, four providers and one medical ethicist. This manuscript describes the ESAG’s role and impact on the trial.
Methods
During early trial development, the research team assembled the ESAG to inform plans for each phase of the trial. ESAG members provide feedback and engage in problem solving to improve trial implementation. Each year, members participate in one in-person meeting, web conferences and targeted email discussion. Additionally, they complete a survey that assesses their satisfaction with communication and collaboration. The research team collected and reviewed stakeholder input from 2014 to 2018 for impact on the trial.
Results
The ESAG has informed trial design, implementation and dissemination planning. The group advised the trial’s endpoints, regimen list and development of cohort and usual care arms. Based on ESAG input, the research team enhanced patient surveys and added pharmacy-related questions to the component application to assess order entry systems. ESAG patient partners collaborated with the research team to develop a patient brochure and study summary for clinic staff. In addition to identifying recruitment strategies and patient-oriented platforms for publicly sharing results, ESAG members participated as co-authors on this manuscript and a conference poster presentation highlighting stakeholder influence on the trial. The annual satisfaction survey results suggest that ESAG members were satisfied with the methods, frequency and target areas of their engagement in the trial during project years 1–3.
Conclusions
Diverse stakeholder engagement has been essential in optimizing the design, implementation and planned dissemination of the TrACER Study. The lessons described in the manuscript may assist others to effectively partner with stakeholders on clinical research.
PURPOSE Although financial toxicity is a growing cancer survivorship issue, no studies have used credit data to estimate the relative risk of financial hardship in patients with cancer versus individuals without cancer. We conducted a population-based retrospective matched cohort study using credit reports to investigate the impact of a cancer diagnosis on the risk of adverse financial events (AFEs). METHODS Western Washington SEER cancer registry (cases) and voter registry (controls) records from 2013 to 2018 were linked to quarterly credit records from TransUnion. Controls were age-, sex-, and zip code–matched to cancer cases and assigned an index date corresponding to the case's diagnosis date. Cases and controls experiencing past-due credit card payments and any of the following AFEs at 24 months from diagnosis or index were compared, using two-sample z tests: third-party collections, charge-offs, tax liens, delinquent mortgage payments, foreclosures, and repossessions. Multivariate logistic regression models were used to evaluate the association of cancer diagnosis with AFEs and past-due credit payments. RESULTS A total of 190,722 individuals (63,574 cases and 127,148 controls, mean age 66 years) were included. AFEs (4.3% v 2.4%, P < .0001) and past-due credit payments (2.6% v 1.9%, P < .0001) were more common in cases than in controls. After adjusting for age, sex, average baseline credit line, area deprivation index, and index/diagnosis year, patients with cancer had a higher risk of AFEs (odds ratio 1.71; 95% CI, 1.61 to 1.81; P < .0001) and past-due credit payments (odds ratio 1.28; 95% CI, 1.19 to 1.37; P < .0001) than controls. CONCLUSION Patients with cancer were at significantly increased risk of experiencing AFEs and past-due credit card payments relative to controls. Studies are needed to investigate the impact of these events on treatment decisions, quality of life, and clinical outcomes.
Hospitalization and high-cost imaging scans are burdensome to patients and caregivers at the end of life. Our findings suggest that policies that facilitate appropriate imaging, opioid, and hospice use and that encourage supportive care may improve end-of-life care and quality of life.
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