San Francisco, CA—The era of tyrosine kinase inhibitors (TKIs) has transformed chronic myeloid leukemia (CML) from an often fatal disease to a chronic disease with ongoing treatment. Joanne S. Buzaglo, PhD, Senior Vice President of Research and Training at the Cancer Support Community, presented results from a patient survey of patients with CML at ASH 2014, indicating that the treatment of CML imposes a significant economic burden on patients and increases psychosocial distress, which together lead to reduced adherence to treatment.
The survey data “suggest that psychosocial distress and financial burden may have a greater impact on treatment adherence than financial burden alone,” said Dr Buzaglo.
Several other studies have reported that the financial burden associated with CML treatment is negatively affecting treatment adherence. Studies have reported significant decreases in 5-year event-free survival with poor adherence to TKIs, and poor adherence occurs more frequently than physicians recognize.
Patient-Reported Outcomes
The Cancer Support Community, in partnership with the Leukemia & Lymphoma Society, registered 484 patients living with CML to the Cancer Experience Registry. Of the registrants, 81% (N = 393) responded to this survey that included questions about the financial burden of CML and cancer-related distress.
Stress and anxiety over managing the financial impact of CML was measured with the Impact of Event Scale, and 15 items from a validated distress screener were calculated to create a score for overall distress; of this, 4 items were summed to indicate risk for depression. The analysis included 327 US-based patients with a median age of 59 years.
The annual income of patients surveyed was <$40,000 in 32% of patients; $40,000 to $79,000 in 31% of patients; and ≥$80,000 in 37% of patients.
Impact of Cost of Care on Medication Adherence
• 19% of patients reported missing a dose of oral medication for their CML at least once monthly
• 14% reported postponing prescription
• 10% skipped dosages of their CML medication.
In total, 31% of the patients were defined as having poor drug adherence.
Nearly 50% of the patients reported out-of-pocket (OOP) costs of ≥$100 related to CML monthly, 27% spent ≥$250, 15% spent ≥$500, and 5% spent ≥$1000.
Moreover, 38% said they had to use copay assistance because of the medical costs of CML treatment, 35% had to cut grocery expenses, 33% depleted their savings, 30% used pharmaceutical assistance programs, 18% sold personal property, 17% asked their healthcare provider for a less expensive treatment, 13% had liquidated their assets, 6% went into bankruptcy, and 4% foreclosed on their homes.
Psychological Distress
To reduce the costs associated with CML, 23% of patients postponed seeking psychological support, 17% delayed follow-up on recommendations for complementary treatment (ie, physical therapy), 16% postponed doctors’ appointments, and 12% postponed follow-up screening and/or blood work.
Approximately 45% of patients were at risk for depression and 37% reported clinically high levels of stress-related intrusive ideation about the financial cost of cancer. Greater OOP costs were associated with higher overall distress (P <.001) and increased risk for depression (P <.001), adjusting for income. Among those at risk for depression, financial burden increased the odds of poorer drug adherence by more than 7-fold. Among those not at risk for depression, financial burden had a modest impact on drug adherence (odds ratio, 1.3; P = .60).
“Implications for future research and practice so that patients fully benefit from CML therapy include the development and evaluation of interventions that enhance patient–clinician communications, psychosocial distress screening and referral, and financial counseling and assistance,” concluded Dr Buzaglo.