A theoretical model of financial burden after cancer diagnosis

From the Jones Group and Shankaran Group, Public Health Sciences Division

Cancer treatment can reach an estimated $10,000 per month or more.  Because of the extreme expenses, employment changes, and severity of cancer treatment, cancer care can negatively impact the patient, the patient’s family, and caregivers. Studies have reported that financial burden increases depression, anxiety, and poor quality of life (QOL) in cancer patients and negatively affects the odds of survival.  Currently, financial burden is rarely integrated in clinical practice, no evidence-based interventions exist to alleviate financial burden, and providers are not likely to address cancer care costs. Patient level financial burden is a complex, multi-faceted problem; a conceptual and theoretical model would aid in the development of interventions and policies and enhance patient outcomes. The most recent models of financial burden include descriptions, few causal relationships, and an absence of specific concepts. In addition, the models do not address the issue of moderators or outcomes corresponding to mortality or QoL.  However, it important to understand causal relationships for the existence of cancer care financial burden interventions and polices.

The Jones and Shankaran Groups from the Division of Public Health Sciences introduced a theoretical model of financial burden after cancer diagnosis to add more causal relationships and moderators to existing models and aid in the guidance of future research and clinical practice. This model was derived from recent models, the Second Panel of Cost-Effectiveness, and financial burden literature including psychological theories of stress, depression, and anxiety.  Financial burden is defined as the detrimental effects that cancer has on the patient’s assets and finances due to cancer expenditures. Two dimensions of financial burden are present in the model: material versus psychological and general versus healthcare specific. Therefore, this theoretical model is novel in its approach to fill in the gaps of current theoretical models of financial burden after cancer diagnosis. This study was published in Future Oncology.

The model includes causes of financial burden; the model separates causes of financial burden from precancer factors that increases financial burden like health insurance coverage. Causes of financial burden can be defined as particular events that lead to a loss in income or wealth. Medical cost and non-medical costs, also known as indirect costs, are separated in the model. Medical costs include variables such as co-pays or co-insurances and non-medical costs include transportation to appointments or help with household chores. There is more uncertainty within variable costs than less variable cost. Therefore, medical and non-medical costs can increase stress and become material and psychological financial burdens. Moderators of financial burden are described as individual, organizational, or policy level factors that can mediate the association between cause and financial burden.  Patient moderators may include: race, ethnicity, self-efficacy, cost-expectations, relationship between the caregiver and the patient, socioeconomic status, and health.

Graphical Representation of Graphical abstract of theoretical model of financial burden after cancer diagnosis
Graphical abstract of theoretical model of financial burden after cancer diagnosis Image from Dr. Jones

Material financial burden, located at the center of the model, is divided into financial consequences and financial coping behaviors.  Financial consequences occur due to the failure to pay for healthcare or basic needs. Examples include bills entering collections or having liens placed on assets because of inability to pay bills. General financial consequences can include eviction, decrease in credit score, or a change in socioeconomic status. Financial coping behaviors are defined as events that occur to prevent financial consequences and maintain healthcare and basic needs.  Examples include setting up a payment plan or filing for bankruptcy. Patients engaging in general financial coping behaviors may move to cheaper housing or applying for basic needs assistance.    The first author, Dr. Jones, commented on material vs psychological financial burden, “One of the key breakthroughs, both for this model and my previous work, was showing how material financial hardship differs from the psychological aspects of financial hardship. It’s not only being able to afford basic needs and medical care but the anxiety and depression around financial hardship.” Previous models did not separate financial coping behaviors; however, studies have shown the differences in coping behaviors can lead to different outcomes.

Psychological burden is also located in the center of the model and consists of a host of negative emotions and feelings from causes and material financial burden. It can also occur as anxiety about future material financial burden and causes.  Psychological burden is divided into worry and rumination.  Worry focuses on the patient’s thoughts about the future and is associated with anxiety. Rumination focuses on thoughts about the past and is associated with depression. Both worry and rumination can be further divided into general and health-care specific concepts. This is one of the first models to separate financial rumination from financial worry and anxiety.

The Jones and Shankaran Group created a theoretical, comprehensive model which consisted of financial burden causes, moderators, types of financial burden, and clinical outcomes (QoL, mortality, morbidity).  This model is only the first step in verifying the association between types of financial burden and outcomes. Dr. Jones commented on the importance of the model, “The most important contribution of this model is centering the patient and their experience while still acknowledging the larger societal factors driving financial toxicity after cancer diagnosis.”  Dr. Jones said that “[i]n, we hope to test whether financial interventions can reduce financial anxiety. We want to make sure that we are not only addressing material financial hardship right now but reducing worry about future finances so patients can focus on their cancer treatments.”

This research was not funded.

Fred Hutch/UW Cancer Consortium members Salene Jones, Karen, Syrjala, and Veena Shankaran contributed to this work.

Jones SM, Henrikson NB, Panattoni L, Syrjala KL, Shankaran V. A theoretical model of financial burden after cancer diagnosis. Future Oncology. 2020 Aug (0). https://doi.org/10.2217/fon-2020-0547