By Shira Klapper, Senior Writer/Editor
Reshma Jagsi, MD, DPhil, knows that the cancer care community has made great strides in the way it thinks about survivorship.
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| Reshma Jagsi, MD, DPhil|
“As oncologists, we’re very proud of the fact that we’re doing so well in our ability to cure a higher proportion of breast cancer patients. In turn, there’s more attention to survivorship issues and ensuring that what we’re doing doesn’t cause long-term harm to our patients that we’re not intending.”
One of those unintended consequences—the long-term financial burden experienced by many survivors of breast cancer—is the focus of Dr. Jagsi’s recent study, “The Long-Term Financial Burden of Breast Cancer: Experiences of a Diverse Cohort of Survivors Identified Through Population-Based Registries,” published in the Journal of Clinical Oncology (JCO) online ahead of print (March 24, 2014). The study found that among a sample of 1,502 survivors, 33% reported a decline in financial status since diagnosis, with minority patients experiencing a disproportionate amount of the burden.
Jagsi and her colleagues—composed of a cross-disciplinary group of researchers—focused on several specific measures of “financial decline,” including: patients’ perception of whether they were worse off financially since diagnosis and whether this was due to the breast cancer, total out-of-pocket expenses and how these were financed, and amount of debt due to medical expenses. The research team also assessed changes in employment status and the degree to which patients experienced financial “privation,” defined as going without medication, missing a doctor’s appointment or mammogram, going without health insurance, having utilities turned off, or having to move out of one’s home because of medical expenses.
The study found that among the 33% of respondents who reported a decline in financial status since diagnosis, 77% felt this was partly due to the breast cancer. Factors that put survivors at significantly increased odds of experiencing financial decline attributed to breast cancer were: being Spanish-speaking Latina (SS-Latina), age under 65, household income of under $50,000, part-time work at diagnosis, reduced work hours after diagnosis, lack of substantial prescription drug coverage, breast cancer recurrence, and undergoing chemotherapy.
In addition, 12% of respondents reported having medical debt four years post-diagnosis, with significant differences among racial/ethnic groups: while 9% of whites and 10% of SS-Latinas reported medical debt, that number rose to 15% among blacks and 17% among English-speaking Latinas (ES-Latina). The four racial/ethnic groups in the study were defined as: ES-Latina, SS-Latina, non-Hispanic whites and non-Hispanic blacks.
One of the most concerning statistics was connected to the variable of privation—18% of the respondents, and a significantly higher percentage of blacks and ES-Latinas, reported experiencing at least one privation.
“Eleven percent of our black participants had had their utilities turned off because they couldn’t pay their bills and four percent of all of our respondents told us they had to move out of their homes because of their medical expenses,” said Dr. Jagsi. “Those are really disturbing and important experiences to know about and the kinds of things that the literature to date has really not had sufficient information about.”
Unique opportunity led to study
The idea for the study arose out of a unique opportunity presented to Jagsi, who is also the first author of the study, and her colleagues.
“We had this incredible opportunity for a collaboration with two Surveillance, Epidemiology and End Results (SEER) registries, one in Metropolitan Los Angeles and one in Metropolitan Detroit,” said Dr. Jagsi. The ability to include data from patients outside of Dr. Jagsi’s home institution—University of Michigan—gave the study a methodological advantage.
“Generally when you do surveys, you’re able to target individuals who were treated at your academic medical center or the medical centers you’re affiliated with, but gaining access to the LA data as well as the full range of patients captured by the Detroit SEER registry meant we were able to get a true population-based sample from two diverse metropolitan areas,” said Dr. Jagsi.
The study had the additional advantage of including researchers from a wide array of academic disciplines, including oncology and bankruptcy law.
“The second author on the study is a Law Professor with experience in empirical studies of bankrupt populations,” said Dr. Jagsi. “So he was able to bring in questionnaires from the field of consumer finance that would not necessarily have been accessible to some of the physicians who were doing this study.”
Dr. Jagsi’s study also benefited from the diversity of its sample.
“We were able to oversample for minorities,” said Jagsi. ”We wanted to be able to see whether there were certain vulnerable sub-groups of patients towards whom we might be able to target interventions in the future.”
“To our knowledge this is the first study to report granular, individual financial experiences in a diverse, population-based sample of breast cancer patients.”
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Reshma Jagsi, MD, DPhil, is an Associate Professor in the Department of Radiation Oncology at the University of Michigan Health System and Research Investigator in the Center for Bioethics and Social Sciences in Medicine. She has been a member of ASCO since 2004.
to read the abstract.
to view a PDF of the full article.
Jagsi, R, Pottow, JAE, Griffith, KA, et al. The long-term financial burden of breast cancer: experiences of a diverse cohort of survivors identified through population-based registries. J Clin Oncol, 2014; Published online ahead of print 3.24.2104.
The Exclusive Coverage series on ASCO.org highlights selected research from JCO with additional perspective provided by the lead or corresponding author.
@ 2014 American Society of Clinical Oncology