Adult survivors of childhood cancer should be screened for financial problems that might cause them to delay or skip medical care or to suffer psychological distress. The recommendation from St. Jude Children's Research Hospital researchers followed an analysis that found 65 percent of survivors reported financial challenges related to their childhood cancer diagnoses.
The research included 2,811 long-term pediatric cancer survivors enrolled in the St. Jude Lifetime Cohort study (St. Jude LIFE). The findings follow the largest study yet focused on financial hardship and its consequences for childhood cancer survivors. The research appeared today in the Journal of the National Cancer Institute.
"Advances in treatment and supportive care have increased survival rates for most childhood cancers. By 2020, there will be an estimated 500,000 childhood cancer survivors in the U.S.," said first and corresponding author I-Chan Huang, Ph.D., an associate faculty member in the St. Jude Department of Epidemiology and Cancer Control. "Until now, little was known about the financial hardships that survivors of pediatric cancer face."
The analysis found that financial hardship, both material and psychological, related to health care expenses, is widespread among pediatric cancer survivors. The consequences affect all aspects of survivors' lives. Financial hardship is associated with reduced health-related quality of life, leaving survivors at greater risk for depression and suicidal thoughts, poor retirement planning and difficulty securing health and life insurance. Previous studies have reported that suicidal thoughts are associated with increased mortality rates.
"These findings suggest primary care doctors and oncologists should routinely screen childhood cancer survivors for possible financial hardship," Huang said. St. Jude is developing a screening tool to help identify at-risk survivors as well as possible interventions to address the problem. For now, Huang recommended health care providers routinely ask patients who are childhood cancer survivors if they are unable to purchase medications, ever skip appointments for economic reasons or worry about how to pay their medical bills.
Survivors in this study were, on average, almost 32 years old, and ranged in age from 18 to 65. They were an average of 23 years from their pediatric cancer diagnosis. All had been treated at St. Jude and enrolled in St. Jude LIFE, a study that aims to improve life for childhood cancer survivors now and in the future. Participants return to St. Jude periodically for several days of clinical and functional assessments. Data for this study was collected during the survivors' first St. Jude LIFE evaluations.
This study focused on survivors' self-reported financial resources as well as their level of financial distress and coping strategies. About one in five survivors (22.4 percent) reported that childhood cancer had affected their financial status. More than half of survivors (51.1 percent) indicated they worried about paying for care, and 33 percent said finances kept them from seeking medical care.
Overall, 65 percent of survivors identified problems in at least one of the three aspects of financial health that were the study's focus. Fifty-six percent reported two problem areas and 9 percent of survivors reported experiencing all three.
"This analysis suggests the issue is more widespread among pediatric cancer survivors than among survivors who were diagnosed with cancer as adults," Huang said. Previous studies from other researchers found that 30 percent of the survivors of adult-onset cancers reported financial problems and fewer than 20 percent indicated that finances caused them to skip or delay care. While the difference may reflect differences in study design, Huang said the findings also "highlight the unique financial challenges facing pediatric survivors."
Age at time of evaluation, education level and income were the strongest predictors of financial problems. Survivors who were 40 years old or older, had not completed high school or had an annual household income of less than $40,000 were as much as four-times more likely to identify some form of financial hardship than survivors who were younger, college graduates or had an annual household income of $80,000 or more.
Chronic health conditions, particularly heart attacks and reproductive disorders, and second cancers as part of treatment-related late effects were associated with an increased risk of financial hardships, including worrying about paying for care. Intensive cancer treatment was also associated with a greater risk of financial hardship.
"Severe late effects that emerge early in life and disrupt education and training opportunities are a double hit for survivors. These health problems decrease the survivors' earning mobility and financial security later in life," Huang said. "The phenomenon leaves them at risk for poor health and psychological outcomes compared to healthier survivors."
Unfortunately, national health policy fails to address financial challenges survivors face, researchers noted. For example, the current health care law does not mandate coverage of many screening tests recommended for survivors by the Children's Oncology Group, an authoritative international organization involved in clinical trials and health policy recommendations.
The other authors are Nickhill Bhakta, Tara Brinkman, Kevin Krull, DeoKumar Srivastava, Melissa Hudson and Leslie Robison, all of St. Jude; and James Klosky, formerly of St. Jude and now of Emory University, Atlanta.
The research was funded in part by grants (CA195547, CA02176533) from the National Cancer Institute, part of the National Institutes of Health; and ALSAC, the fundraising and awareness organization of St. Jude.
St. Jude Children's Research Hospital
St. Jude Children's Research Hospital is leading the way the world understands, treats and cures childhood cancer and other life-threatening diseases. It is the only National Cancer Institute-designated Comprehensive Cancer Center devoted solely to children. Treatments developed at St. Jude have helped push the overall childhood cancer survival rate from 20 percent to 80 percent since the hospital opened more than 50 years ago. St. Jude freely shares the breakthroughs it makes, and every child saved at St. Jude means doctors and scientists worldwide can use that knowledge to save thousands more children. Families never receive a bill from St. Jude for treatment, travel, housing and food — because all a family should worry about is helping their child live. To learn more, visit stjude.org or follow St. Jude on social media at @stjuderesearch.