Dec 22, 2014
By Shira Klapper, Senior Writer/Editor
A new study in the Journal of Oncology Practice (JOP) identified three socioeconomic and health care factors associated with the financial burden experienced by the caregivers of children and young adults with cancer. Published online, ahead of print, October 14, the study found that caregivers whose children or charges experienced five or more unexpected hospitalizations during the first to fifth year after diagnosis, and caregivers who had quit or changed jobs within that same time period reported a significantly higher financial burden compared to caregivers who had not experienced these events.
The study, “Financial Burden of Pediatric Cancer for Patients and Their Families” also found that caregivers who lived in rural areas reported feeling a higher degree of financial burden, compared to caregivers who lived in nonrural areas, although this difference did not vary by time since diagnosis. Differences in caregivers’ income levels, education, and race were not associated with significant differences in perceived financial burden.
Data for the study was gathered from 254 caregivers who provided information on socioeconomic status and health care factors, such as number of unexpected hospitalizations and PICU admissions, and who answered a questionnaire in which they rated their financial burden on a scale from zero to one hundred.
According to the study’s first author, Echo L. Warner, MPH, of the University of Utah, Salt Lake City, “This study is one of a few in the United States that have looked at the financial impact of childhood cancer and, to our knowledge, the first to look at caregivers’ reported financial burden over time since diagnosis.
Financial costs of unexpected hospitalizations
Caregivers whose children or charges had five or more unexpected hospitalizations during years one through five after diagnosis reported a perceived financial distress that was 24.9 points higher (out of a scale of 100) than those who had fewer hospitalizations. Commenting on this finding, Ms. Warner said this greater burden might be due to the high costs associated with hospitalization in pediatric cancer, which averages $40,000.
“Out of any pediatric hospitalization, those related to cancer are five times more costly,” said Ms. Warner.
Cutting back on employment to care for a child
Ms. Warner also commented on the study’s finding that financial distress was 13 points higher among caregivers who quit their jobs or cut down on work hours due to a child’s cancer diagnosis
“You can imagine that if your family has two main providers and one of them quits their job or cuts down time to care for a child, that could have a substantial impact on family finances,” said Ms. Warner.
Reflecting on the finding that people from rural areas experience greater financial burden, Ms. Warner noted that this is consistent with other studies showing that people in rural areas often face health care challenges—such as being uninsured or under-insured—that create financial burden. Ms. Warner also noted that the greater financial burden among rural residents might be due to the fact that the study site, Primary Children’s Hospital, serves six states in the intermountain west region—this wide catchment area means that many caregivers and children must travel far distances to receive care and incur substantial out-of-pocket costs for gas, lodging, and other expenses.
Research paves the way for interventions
According to Ms. Warner, the clinical significance of this JOP study is in its potential to pave the way for interventions that may help ease financial burden among caregivers of patients with pediatric cancers.
“What is exciting about this study is that it indicates that some factors associated with financial burden are likely somewhat modifiable,” said Ms. Warner. “For example, for unexpected hospitalizations there are strategies that we can employ such as outpatient appointments or even home health that may manage some of the more acute problems and keep kids out of the hospital.”
“As far as changes in employment, obviously, we can’t ask parents not to prioritize caring for their children, but we can try to be more flexible in scheduling appointments and support policies such as work-leave options and FMLA that can help families.”
Echo L. Warner, MPH is a Research Analyst and Project Manager at the Huntsman Cancer Institute at the University of Utah and a doctoral student at the University of Utah College of Nursing.
Read the abstract of the original JOP article.
View the PDF of the original JOP article.
Warner EL, Kirchhoff AC, Nam GE, et al. Financial burden of pediatric cancer for patients and their families. J Oncol Pract. Epub 2014 Oct 14.
The Exclusive Coverage series on ASCO.org highlights selected research from JCO and JOP with additional perspective provided by the lead or corresponding author.
@ 2014 American Society of Clinical Oncology