Factors Related to Cancer Patients' Desire for Information about the Cost of Care

Background/Purpose:  Increased attention is being paid to the high cost of cancer care, both for society for individual patients. Several overlapping or related terms have been used to describe the financial impacts on individual patients with cancer.  Financial burden can be thought of as the impact cancer has on personal financial wellness due to loss of family income and/or out of pocket expenditures for medical co-pays and for incidental expenditures such as transportation, parking, day care, and non-reimbursed purchases.  Financial stress or distress conveys the extent of worry, anxiety or anguish over financial decline, either anticipated or actually experienced.  Such distress is correlated with poor patient satisfaction, higher rates of depression and non-compliance.  Financial toxicity is a newer term analogous to the phenomenon of cancer treatment-related organ-based harm (toxicity).  It reflects recognition that there is a financial harm related to rendered treatments.

Research indicates cancer patients are concerned about the cost of care, and many want more information about costs.  What is not yet clear is which patients want more information and how much information they desire.  This study examined whether the amount of desired information about their cost of care varied between patients based on factors such as age, gender, financial wellbeing, and preferences for control over treatment decisions.  The hypotheses were that the amount of desired information would be significantly related to both financial distress and desire for control of treatment decisions.

Methods: A convenience sample of cancer patients (N = 176) receiving ongoing treatment at a community cancer center completed a survey that assessed the amount of information they desired and received from their oncologists about topics including information about treatment costs.  Control preferences, objective and subjective financial wellbeing, quality of life, anxiety, and depression were assessed using validated measures.  Generalized linear models tested the associations between participant characteristics and the amount of cost information desired.

Results:  Few patients (4%) wanted less information about costs than they had received; half (49%) wanted more.  Partnered and younger individuals wanted more information than single and older people, respectively, ps < .05.

Controlling for partner status, age, and treatment type, control preferences were the strongest predictor of the amount of cost information patients desired, b = 0.25, p = .031, 95% CI (0.024, 0.048).

Desire for cost information was unaffected by gender, anxiety, depression, quality of life, type of health insurance, income, degree of financial distress, and personal costs.

Conclusions/Implications: Most cancer patients want information about costs of care.  How much control a patient wants to have in treatment decisions is a strong indicator of how much cost information they would like.  Degree of financial distress, income, gender, levels of anxiety and depression, and quality of life are not significantly related to desire for cost information.  In practice, treatment teams should individualize cost discussions with patients. Further research is needed about how to best incorporate discussion of the cost of care including who should initiate this discussion and how often.