Development of the COST questionnaire began with a literature review and a series of extensive interviews. de Souza and colleagues spoke with 20 patients and six cancer professionals, as well as nurses and social workers. That produced a list of 147 questions. The researchers pared the list down to 58 questions. Then they asked 35 patients to help them decide which of the remaining questions were the most important. The patients narrowed the list down to 30.
"In the end, 155 patients led us, with some judicious editing, to a set of 11 statements," de Souza said. "This was sufficiently brief to prevent annoying those responding to the questions but thorough enough to get us the information we need."
All 11 entries are short and easy to understand. For example, item 2 states: My out-of-pocket medical expenses are more than I thought they would be. Item 7, more optimistic, states: I am able to meet my monthly expenses. For each question, patients choose from five potential responses: not at all, a little bit, somewhat, quite a bit, or very much.
Learning how a patient responds may help caregivers determine who is likely to need education, financial counseling, or referral to a support network. The quiz may also predict who is likely to have problems and will require interventions.
All patients who helped develop the study had been in treatment for at least two months and had received bills. Excluding the top 10 percent and the bottom 10 percent, patients in the study earned between $37,000 and $111,000. The median annual income for these patients was about $63,000.
The researchers expected that financial toxicity would correlate with income. "But in our small sample that did not hold up," de Souza said. "People with less education seemed to have more financ
|Contact: John Easton|
University of Chicago Medical Center