The researchers looked for changes in the questionnaire responses each quarter that would indicate the patient was facing major financial hardship, which was defined as the occurrence of at least one of the following situations: an increase in debt, taking on a new loan, selling or refinancing a home, or experiencing a decline in income of at least 20%.
They found that, although almost all of the patients were insured (98%), 71.3% of them experienced major financial hardship during the first year after their diagnosis. They also found that patients who reported major financial hardship three months after joining the study tended to report a decline in quality-of-life measures on their six-month questionnaires.
The study team further evaluated whether the percentage of patients facing hardship differed according to patients’ age, race, marital status, employment status or annual income. They found no statistically significant differences among these groups, suggesting that the risk of financial hardship was similar among key patient groups.
One overarching goal of the study was to determine whether it was even feasible to collect financial information in this way from patients with advanced cancer, or whether patient concerns about issues such as privacy and data security would keep many from joining the trial.
“Our experience shows that cancer patients are highly motivated and willing to share financial details and experiences,” Shankaran said, “particularly if it can help advance solutions to lessen the financial burden of cancer care.”
Building on the results of S1417CD, Shankaran and her SWOG colleagues recently launched a new nationwide study, S1912CD (NCT04960787), that is testing whether a financial counseling intervention can help ease financial hardship for patients with cancer.
SWOG is part of the NCI's National Clinical Trials Network and the NCI Community Oncology Research Program, or NCORP, and is part of the oldest and largest publicly funded cancer research network in the nation. SWOG has nearly 12,000 members in 47 states and nine foreign countries who design and conduct clinical trials to improve the lives of people with cancer. SWOG trials have led to the approval of 14 cancer drugs, changed more than 100 standards of cancer care, and saved more than 3 million years of human life.
Study S1417CD was sponsored by the NCI, led by SWOG, and conducted by the NIH-funded NCORP. It was supported by the ASCO Foundation Conquer Cancer Career Development Award 2013, by a SWOG Hope Foundation Charles A. Coltman, Jr., Award (2010) and by the NIH/NCI through grant CA189974.
In addition to Shankaran, the S1417CD study team included Dr. Joseph M. Unger and Amy K. Darke of SWOG Statistics and Data Management Center, which is co-located at Fred Hutch and Cancer Research and Biostatistics in Seattle, Dr. Jennifer Marie Suga of Kaiser Permanente-Vallejo/Kaiser Permanente NCORP, Dr. James L. Wade III of Cancer Care Specialists of Illinois/Heartland NCORP, Dr. Peter J. Kourlas of Columbus Oncology Associates/Columbus NCORP, Dr. Sreenivasa R. Chandana of Cancer and Hematology Centers of Western Michigan/Cancer Research Consortium of West Michigan NCORP, Dr. Mark A. O'Rourke of Prisma Health Cancer Institute/NCORP of the Carolinas, Dr. Suma Satti of Ochsner Cancer Institute, Diane Liggett of SWOG Data Operations Center/Cancer Research And Biostatistics, Dr. Dawn L. Hershman of Columbia University and Dr. Scott D. Ramsey of Fred Hutch.