Communicating About Costs: A qualitative analysis to understand the out-of-pocket financial burden associated with cancer care

Abstract

EXECUTIVE SUMMARY

Policy Question

In the context of the Affordable Care Act, what factors create financial burden for female breast cancer patients eligible for Medicare? Specifically, how can LIVESTRONG, a leading cancer advocacy organization, minimize the individual burden from out-of-pocket costs?

Recommendations

The goal of this study was two-fold: 1) develop recommendations to target LIVESTRONG ‘s research about the practical concerns of survivorship, and 2) improve the effectiveness and impact of LIVESTRONG’s navigation services. Correspondingly, my recommendations are separated into these two categories. Past research on patient-provider communication, medical decision-making, and cost-effectiveness precede this work.

All recommendations were evaluated using the criteria of minimizing implementation costs, and maximizing collaboration and buy-in among stakeholders, and maximizing applicability to clients of diverse backgrounds.

Further Research

1. Conduct market research to develop a segmented approach to assist different client groups. OOP costs are a universal challenge. However, different types of individuals (age, gender, race, socio-economic position, insurance type, etc.) access information in different ways. These groups likely have different coping strategies and varying comfort levels in discussing costs. The Medicare population in this study, for example, had limited experience using the Internet. They also did not appear to be widely connected to the larger community of cancer survivors.

2. Build an infrastructure of partners, professional standards, and political support to advance the field of cancer navigation. Since payers do not yet recognize these services for reimbursement, it will be important to demonstrate value for money and any associated cost savings. Any overlap or points of collaboration with other medical providers, including nurse practitioners, social workers, and medical financial counselors, should be carefully studied.

Clinical Practice

3. Improve tools that facilitate information sharing and increase ease of accessing financial assistance. There are two audiences for these tools: 1) direct access by patients and caregivers, or 2) professional use by the cancer care team that works with patients, including social workers, financial counselors, and cancer navigators.

4. Develop a curriculum to share information on the financial impacts of cancer treatment at the clinical level. Use LIVESTRONG Survivorship Centers of Excellence as a platform to develop targeted programs for physicians, medical professionals, and patient assistance organizations.

5. Lobby for more accountability and transparency about the cost of care, and consumer protection from prohibitive cost sharing, high interest health payment plans, or “wallet biopsy” software that might evade patient privacy laws.

Overview

Although much is known about the rising economic cost of cancer care compared to other diseases in the United States, there is little research to date on effective strategies to reduce patient financial burden. A first step is to better understand what type of challenges patients face and the events leading up to these challenges. This project uses a qualitative study design to explore the patient experience surrounding OOP costs, specifically for female breast cancer survivors on Medicare.

My study hypothesizes that there is little communication about costs early in treatment, and that increased communication could help alleviate individual burden. A literature review suggests that more timely communication could improve the patient experience, and in some cases, reduce financial hardship. More cost information, coupled with support services, may improve medical decision-making and in the long term, health outcomes. Although provider-patient communication is of specific interest, social workers and financial counselors contribute to this conversation. The study design also assumes that caregivers, friends, and family play an essential role in facilitating information about costs and devising strategies to cope with financial burden.

Research and Methods

In-depth, semi-structured telephone interviews were conducted until the criterion of thematic saturation was met. Interviews were conducted with a total of 22 participants selected from a prospective, nationwide survey completed by the Duke Cancer Care Research Program in 2011. I selected female breast cancer survivors, 65-75 years old and eligible for Medicare at the time of completion of the baseline survey for my study. Eligible participants must have received anti-cancer therapy for breast cancer (chemotherapy or hormonal treatment) within the past year. Participants were required to be English-speaking, literate, and with full capacity to be interviewed independently.

When the original survey respondents were sorted based on these criteria, there were 70 participants eligible for phone interviews. I interviewed patients who both a) did talk to their doctor about costs of care and b) patients who did not speak to their doctor about cost of care. Survey respondents reported significant/catastrophic, moderate, or minimal financial burden. Participants were not equally distributed in all categories, but efforts were made to speak to similar numbers of each type among the 70 eligible participants.

Data

Transcripts were analyzed using a thematic analysis approach, where major themes were coded, followed by minor themes. The major themes identified in this study represent different stages of communicating about costs. First, many survivors discussed the cost of their care only when the burden became unmanageable. Second, a number of participants discussed the process of identifying resources and determining eligibility. Third, several participants expressly stated that there is an associated need for self-advocacy in applying for assistance. Finally, several participants described significant emotional impacts of their financial concerns, including feelings of shame. They also showed immense gratitude for the assistance, and a desire to pay it forward to other survivors.

Interviews were also conducted with two LIVESTRONG patient navigators, a HealthWell Foundation Board Member, and the Oncology Services Revenue Manager for the Duke University Medical Center. These stakeholders reflected on the complexity of the current system in which cancer care is administered, with multiple providers and varying resources available.

Conclusions

In this detailed qualitative study, I gained insight into the varied situations in which older women with breast cancer experience OOP costs related to their cancer care. Through their narratives, participants described a fragmented continuum of care, without programs in place to safeguard financial health as well as physical health in a sustainable, reliable manner.

Many participants only considered discussing costs with their care team only once they were in financial distress – when it was too late. There were psychological and behavioral barriers to addressing this practical concern; many participants indicated that as long as insurance was paying, they were indifferent to the cost of their cancer care. However, once OOP costs became a significant factor, often as a result of the Medicare coverage gap, they were then willing to seek assistance. Additionally, when branded drugs became generic, participants became less concerned with the cost of their care. Many of the hormone therapies for breast cancer went off patent during the course of the study and significantly cheaper generic options became available for study participants.

These findings provide additional, nuanced understanding of the factors that impact the financial burden of cancer care for individual patients. My hypothesis was that early communication did not occur between patients and physicians about the cost of care – specifically, the individual burden related to OOP costs. These results suggest that communication may be happening, but that it is currently not helpful for patients. First, there is still too little communication overall, and it is mainly initiated by the patient. Only the most proactive patients appear to be seeking out this type of information. Second, communication is often too late. Patients will wait until they lose coverage or have other financial complications before trying to understand cost details relating to their treatment. Third, there are not sustainable solutions in terms of assistance – although help is available, it is highly variable and difficult to access. These conclusions suggest that larger policy changes on a national scale are required – validating the need for comprehensive health care reform but also highlighting the systemic, rooted nature of these challenges.