Most people think of hair loss as a possible side effect from cancer, not job loss. But, the reality is that a cancer diagnosis and treatment is often exacerbated by “financial toxicity” that can have negative outcomes. If treatment is successful, the cancer goes away, but for many patients the financial pain multiplies and metastasizes in a significant long-term side effect.
Treatment expenses, ongoing medical costs, decreased ability to work and other issues cause financial stress that a patient must be able to tolerate in addition to their medical situation. A University of Chicago team of cancer specialists has developed the first tool to measure a patient’s exposure for and ability to deal with the disease’s financial stress. The researchers named their patient-reported measurement tool Comprehensive Score for Financial Toxicity or COST.
As discussed in the July issue of Cancer, the tool, which is essentially a questionnaire was developed from research and conversations with over 150 patients dealing with advanced cancer cases.
For the study that resulted in COST, Dr. Jonas de Souza, a cancer of the head and neck specialist, and his team talked with 20 patients, six cancer experts, nurses and social workers. That generated a list of almost 150 questions, which the researchers pared down. The team then asked 35 patients to help determine which of the remaining 58 questions they deemed as the most important. The result was a 30-question list.
Ultimately, COST evolved into a set of 11 statements or questions with five potential multiple-choice answers for each. De Souza noted that this design would be brief enough to avoid annoying the respondents, but would at least capture the necessary information.
For example, one statement deals with whether or not their out-of-pocket medical care expenses are more than they expected. The potential responses ranged from very much to not at all.
The ultimate goal is to help caregivers learn which patients are most likely to need financial counseling or help from a support network. They want to predict who will require interventions and who is most likely to suffer financial pain that metastasizes even after the cancer is in remission or goes away completely.
The group of patients who helped develop the study had all been in cancer treatment for at least two months and had already received some bills. Eliminating the top and bottom 10 percentiles, the patients who participated in the questionnaire-development study earned between $37,000 and $111,000, with a median annual income of $63,000.
The research team had expected financial toxicity to closely correlate with income. “But in our small sample that did not hold up,” de Souza said. They found that those with less education suffered more from financial distress. Income variations had little impact.
De Souza acknowledged that additional studies need to be done to confirm that education not income really impacts the financial stress in dealing with cancer. In fact, they are currently working on a larger study to validate their findings and test the newly developed questionnaire/scale with cancer patients to look further into quality of life and anxiety concerns. The long-term goal is undoubtedly to find ways to make sure both the financial pain and cancer do not metastasize and help the patients make sure the stress of being ill goes away too.
By Dyanne Weiss