Every year, almost 16,000 American children are diagnosed with cancer before their 21st birthday. After receiving a devastating diagnosis and starting intensive treatment, patients and their immediate family members can experience profound effects. For patients, these can include considerable physical side effects and psychological stress. Their family members, on the other hand, can experience psychosocial stress, changes in family dynamics, and financial impacts. Our focus is often on the child with cancer, and rightly so: what kind of treatment is best for them? How can we make treatment easier and better tolerated? How do we do everything we can to help them live a long, healthy life? But what about their siblings and other family members?
In a study recently published in Cancer, Dr. Tim Ohlsen, a research associate and pediatric oncologist, along with his mentor Dr. Eric Chow, Professor in the Clinical Research Division and Head of Cancer Epidemiology, examined financial hardships experienced in adulthood by siblings of childhood cancer survivors.
Their multi-institutional collaborative team conducted a cross-sectional study with the Childhood Cancer Survivor Study (CCSS) cohort, which contains cancer and follow-up information for over 25,000 long-term survivors of childhood cancer, as well as over 5,000 nearest-age siblings. The CCSS surveyed roughly 3,500 cancer survivors and 900 siblings about financial hardship between 2017 and 2019. For this study, researchers focused on siblings themselves, rather than cancer survivors, who had previously been shown to experience long-term financial effects. First, they compared how siblings’ experiences with financial hardship differed from Americans from the general population who responded to matching questions of financial hardship on two national surveys, adjusting their analysis for important social and demographic factors. Then, they evaluated sibling factors that increased the likelihood of reporting financial hardship in adulthood. For the purposes of this study, the team defined three general categories of financial hardship: 1) material: difficulty affording basic necessities, 2) psychological: excessive worry about finances, and 3) behavioral: delaying, forgoing, or rationing recommended medical care to save money.
Siblings commonly reported all types of financial hardship. Of siblings, an alarming 24% had skipped at least one type of needed medical care, specifically due to cost, in the previous year. Additionally, 35% reported active material hardship or difficulty paying off medical bills, and 28% and high degrees of financial worries about affording food, housing, and other things. Interestingly, over half of siblings expressed high degrees of worries about being able to afford medical expenses in the event of theoretically getting sick or injured. Compared with the U.S. general population, siblings had greater than twice the odds of skipping prescription medications due to cost. They were 38% more likely to forego medical care, 34% more likely to skip dental care, and also more likely to report high worries about paying bills and difficulties affording food. Mirroring trends in the general population, several factors were associated with financial hardship, including female sex, age, lower income, lack of health insurance coverage, chronic medical conditions, and higher non-medical/non-home debt.
Per Dr. Ohlsen, the study’s first author, “these results tell us that not just patients, but their family members, may have long term financial impacts from their cancer care, and we need to spend more time thinking about how whole families may be affected during treatment and into survivorship.” He acknowledged that the study, while thought-provoking, has several limitations that make future research important, and that the results potentially pose as many questions as answers. “We really need to start examining patients and families longitudinally, at several timepoints throughout treatment and afterward, to get a better idea of how financial hardships develop and evolve over time.” He and his coauthors reiterated in the manuscript that there is no clear understanding of the mechanisms driving siblings' experiences in adulthood. Dr. Ohlsen stated that it is possible that these effects could be due to the considerable financial burdens that families of pediatric patients with cancer may experience during treatment and potentially in survivorship: “families have troubles maintaining employment and income during a critical time, and also sometimes spend a lot of money caring for their child. I really think this could lead to fewer educational opportunities for patients and family members, fewer financial resources that children are receiving from their parents, or effects from other things down the road. Like, if a family were to develop material hardship during treatment and go several months without paying the bills or getting good food, that has to have some effect, right?” For now, this study serves as a stark reminder of the need for regular screening and psychosocial/financial support for families throughout a challenging time. “This is a relatively unexplored area of research within pediatric oncology,” states Ohlsen. “We are excited to continue to learn about this.”
Fred Hutch/University of Washington/Seattle Children’s Cancer Consortium members Drs. Tim Ohlsen and Eric Chow contributed to this study, along with Drs. Arti Desai (Seattle Children’s) and Wendy Leisenring (Fred Hutch).
This work was funded by the National Cancer Institute, Cancer Center Support (CORE), the American Lebanese Syrian Associated Charities and a Childhood Cancer Survivor Study Trainee Career Development Award.
Ohlsen TJD, Wang H, Buchbinder D, Huang IC, Desai AD, Zheng Z, Kirchhoff AC, Park ER, Krull K, Conti RM, Yasui Y, Leisenring W, Armstrong GT, Yabroff KR, Nathan PC, Chow EJ. Financial hardship among siblings of long-term survivors of childhood cancer: A Childhood Cancer Survivor Study report. Cancer. 2023 Dec 15. PMID: 38100563