Essay on Families of Pediatric Cancer Patients: Economic Impact of Losses, Disruptions, & Hardships

What is the Economic Impact Associated with Perceived Income Losses, Work Disruptions, and Financial Hardships of Families of Pediatric Cancer Patients?

The American Cancer Society Action Network (2019) estimated that over 15,000 U.S. children under age 19 were diagnosed with cancer in 2018. There is still no known cure for many types of pediatric cancers, but owing to improved therapies, childhood cancer patients have high chances of survival, with the majority living at least five years after diagnosis. However, the high cost of life-saving cancer therapy presents huge financial burdens for the families of the patients. According to Bona et al. (2014), the financial impact of treating pediatric cancer has been described to exceed that of the general catastrophic illnesses population by far. About 70% of pediatric cancer families struggle with financial burden besides the illness. Between 64 and 85% grapple with work disruptions, while about 40% have to quit their jobs. Based on these statistics, this discussion seeks to explore the question: "What is the economic impact associated with perceived income losses, work disruptions, and financial hardships of families of pediatric cancer patients?"

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Children with cancer require a disproportionate amount of care and health resources. Warner, Kirchhoff, Nam and Fluchel (2015) reported that pediatric cancer patients in the United States were hospitalized for eight days more at an average cost of $40,400, which was five times higher than other pediatric conditions ($8,100) in 2009. The additional hospitalizations of pediatric cancer patients have been attributed to procedures related to the management of non-Hodgkin lymphoma, which cost $46,900 and leukaemia, which cost $55,700. The two conditions may lead to unexpected procedures to treat dehydration, septicemia, pain, and infections during cancer treatment.

Unfortunately, all these treatments come with financial hardship for families. In many cases, families report having to borrow money to meet the extra cost of medical care for their children with cancer. Pelletier & Bona (2015) suggest that pediatric cancer causes greater financial hardship for families than other serious sicknesses such as diabetes. Both retrospective and cross-sectional studies of families of children with cancer indicate financial outcomes and risk factors for those with less complicated cancer cases. The risk factors for financial burden have been identified as a new diagnosis, prolonged hospitalizations, and receipt of care far from home (Bona et al., 2014). The burden is disproportionate for poorer pediatric cancer families.

Miedema, Easley, Fortin, Hamilton, and Mathews, (2008) conducted a study in New Brunswick and Newfoundland and Labrador to explore the experiences of families who cared for children with cancer and how these experiences affected their financial well-being. The study found that many parents face financial hardships that increased their family stresses. Nonetheless, families hardly withdraw medical care from their children with cancer due to financial difficulties. The debts accumulated in the course of pediatric cancer treatment have lasting impacts on the financial situation of the family. Many families end up paying debts many years after the treatment. Some parents even reported having to re-mortgage their property or withdraw money from registered education or retirement saving plans to meet the out-of-pocket as well as medical expenses.

Moreover, the study suggested that in most cases, one of the parents, especially mothers, had to either terminate or reduce their employment to take care of the child undergoing cancer treatment. Regardless of how much one contributes to the family income, the loss of employment directly results in an immediate decline in family income (Pelletier & Bona, 2015). By sacrificing their employment, the parents also potentially put their future earnings and retirement benefits in jeopardy. Once an individual is unable to contribute to a company pension plan or a registered retirement savings plan, their income in old age is affected.

Apart from the stress of the illness, the parents and families of pediatric cancer patients also deal with environmental stressors, which are sometimes very severe. For example, pediatric cancer treatment causes lots of disruptions to family dynamics (Miedema et al., 2008). Unlike adult cancer patients, the treatment of pediatric cancer patients completely involves the whole family. Dealing with a child's illness can make parents develop posttraumatic stress disorder. As they dedicate all their attention to the treatment of the sick child, parents may have to stay away from home for extended periods, heavily spending the available family savings. For example, an average parent taking care of a pediatric cancer patient may spend up to $1000 in a hotel for a week. At the same time, that parent would be losing at least $600 of regular income by being away from work for a week.

The scholars further established that there are no adequate government programs to support families with the treatment of children suffering from catastrophic illnesses like cancer in Canada. Although there is a "compassionate leave" program, it only benefits individuals caring for their parents or spouses with terminal illnesses. Parents who have children undergoing cancer treatment are left to face financial ruin on their own. This is despite the increasing pediatric cancer survivorship occasioned by medical and technological advances (Miedema et al., 2008). The situation for parents caring for pediatric cancer patient in Canada represents the plight of parents in most parts of the world. There is need to come up with programs for parents with children receiving treatment for catastrophic illnesses to relieve them from the financial struggles that they face to give proper care to their children with cancer and the rest of the family.

Although the US government offers some economic safety-nets for families struggling with the financial burden of cancer treatment, no studies have been conducted to examine their accessibility to the most vulnerable families. Bona et al. (2014) stated that in most states, families at or below 133% federal poverty level (FPL) receive governmental supports that can limit out-of-pocket expenses such as Medicaid, discounted utilities, stamps or food. However, the eligibility of a family for this program varies significantly from one state to another.

Although families adopt a variety of strategies to cope with financial burdens, there is no clear difference in the patterns of coping between various levels of income (Bona et al., 2014). Given the disproportionate income losses of poorer families, they are more likely to benefit more from conducting fundraising as a coping mechanism. However, statistics suggest that their wealthier peers are not any less likely to implement fundraising too. There is no data relating to pediatric cancer patient health outcomes to the economic burdens of their family. But it is quite apparent that a family who loses a significant proportion of its income in the course of child treatment may have to deal with cost-shifting choices. For example, it may have to deny other family members medical care or forgo home heating to afford food. This has further potential health impacts on both pediatric cancer patients and their siblings.

In a survey of 449 families in the United States, the National Children's Cancer Society (2018) reported that 15% of participants who were not poor when the child was diagnosed with cancer became poor in the course of the treatment. According to the study, 30% of families across levels of income with a child being treated for cancer reported having household material hardship in the first six months of cancer therapy. Household material hardship undermines children's and adult's quality of life, physical health, and mental health.

Unfortunately, even after successful cancer treatment, pediatric cancer families have to worry about the possibility of relapse. A relapse can occur months or even years after successful cancer treatment. Possibility of relapse is a real psychological problem and potential economic difficulty for all pediatric cancer families, including those who have the financial ability to get follow-up appointments and buy prescribed medications (Economic Impact of Childhood Cancer, 2018). Chances of relapse are, however, higher for low-income families.

Conclusion

In conclusion, the economic issues involved in pediatric cancer treatment include its associated financial burden, work and family disruptions or loss of jobs which lead to forfeiture of family income, and loss of income to out-of-pocket bills. The financial burden comes from the high cost of cancer treatment, which is higher than what even most above-average income families in the United States find unmanageable. Financial burden leads to household material hardship, which may cause other health issues for both children and adults. The government, health insurance providers, and hospitals also spend huge amounts of resources on pediatric cancer treatment due to prolonged hospitalizations. As parents have to stay with the pediatric cancer patient during the extended treatment periods, many have to take significant time off from work or even quit their jobs. That means loss of family income. At the same time, they have to meet unexpected out-of-pocket bills which empty family coffers even further.

References

American Cancer Society Cancer Action Network. (2019). Childhood Cancer Research. Retrieved from https://www.fightcancer.org/what-we-do/childhood-cancer-research

Bona, K., Dussel, V., Orellana, L., Kang, T., Geyer, R., Feudtner, C., & Wolfe, J. (2014). The economic impact of advanced pediatric cancer on families. Journal of Pain and Symptom Management, 47(3), 594-603. doi:10.10034/pbc.25716

Miedema, B. (., Easley, J., Fortin, P., Hamilton, R., & Mathews, M. (2008). The Economic Impact on Families When a Child is Diagnosed with Cancer. Current Oncology, 15(4). doi:10.3747/co.v15i4.260

Pelletier, W., & Bona, K. (2015). Assessment of Financial Burden as a Standard of Care in Pediatric Oncology. Pediatric Blood & Cancer, 62(S5), S619-S631. doi:10.1002/pbc.25714

The Economic Impact of Childhood Cancer. (2018). Retrieved from The National Children's Cancer Society website: https:/https://www.thenccs.org/wp-content/uploads/2017/04/the-economic-impact-of-childhood-cancer.pdf

Warner, E. L., Kirchhoff, A. C., Nam, G. E., & Fluchel, M. (2015). Financial Burden of Pediatric Cancer for Patients and Their Families. Journal of Oncology Practice, 11(1), 12-18. doi:10.1200/jop.2014.001495