Perceptions of Financial and Psychosocial Burden Among Patients with Hematologic Malignancies Treated with Novel Oral Antineoplastic Agents

Out-of-pocket expenses incurred by accessing cancer care can range widely, with higher costs showing direct associations with poor treatment adherence, decreased quality of life, and increased mortality. These consequences contribute to significant psychosocial distress that affect interpersonal relationships, financial stability, and employment. Hematologic malignancies have seen a rapid expansion of oral anticancer medication options used in both the upfront and relapsed/refractory settings. While the efficacy and convenience of novel oral medications provide attractive treatment options, there are notable costs associated with these therapies that have altered the treatment-related financial landscape of leukemia and lymphoma care in ways that are poorly characterized. It is imperative that providers understand patient perceptions and experiences regarding out-of-pocket expenses for novel oral antineoplastic treatments, as well as the ways in which perceived psychosocial burdens may change over. We report here cross-sectional data of a longitudinal survey-based study designed to describe patient-specific changes in financial burden, employment limitations, and psychosocial wellbeing in the setting of novel oral antineoplastic drug use in patients treated for an underlying hematologic malignancy.

Patients with an ICD-10 diagnosis code for AML, ALL, CML, CLL, cHL, and NHL were identified through database query. Patients were required to be 18 years or older and initiated treatment with any of the following agents ≤3 months prior to enrollment: Enasidenib, Ivosidenib, Venetoclax, Gilteritinib, Midostaurin, Ibrutinib, Acalabrutinib, Imatinib, Dasatinib, Nilotinib, Ponatinib, Bosutinib, Duvelisib, or Idelalisib. Patients were sent trial recruitment and consent documentation via email. Patients who consented to enrollment were sent a comprehensive survey of 102 questions assessing sociodemographic, employment, and treatment-specific parameters, as well as the following previously-validated survey tools: Functional Assessment of Cancer Therapy (FACT-G7), Comprehensive Score for Financial Toxicity (COST), Health Insurance Literacy Measure (HILM), Work Productivity and Activity Impairment Questionnaire (WPAI;SHP), Work Ability Index (WAI), and Work After Cancer Survey (WACS). Patients were sent surveys at enrollment and at 6 months after initial survey completion.

Seventy-one patients were identified between August 2019 and May 2020, of which 27 patients provided complete survey responses (38% survey response rate). Baseline patient demographics data are reported (Figure 1A). Baseline financial stability was high with 92% reporting annual income over $60,000. Median monthly premium costs were $200 (range, $7.20-$800). Seventy percent of respondents identified themselves as the primary household income earner and 66% reported having a medical savings account. Despite high financial stability measures, 39% reported costs incurred by the time of enrollment had negatively impacted their current financial stability and 84% reported significant fears about incurring future financial hardship due to cancer-related care. Overall, 82% of patients reported sensations of a loss of financial control (Figure 1B).

Fifty-two percent reported employment at the time of enrollment and 43% of patients reported they had stopped working after receiving their diagnosis. Sixty-four percent of patients rated their physical ability to perform work as “poor” or “very poor” (Figure 1C). Only 8% of patients reported having household members cut back working or stop working because of their cancer diagnosis.

Fatigue was the most intrusive symptom with 84% stating that fatigue limited daily activity. Anxiety regarding disease uncertainty was common with 46% of patients describing severe worry about their condition worsening. Overall happiness with quality of life at the time of enrollment was low with 62% of patients reporting little to no happiness with their current quality of life (Figure 1D).

This cross-sectional analysis outlines important baseline physical and psychosocial parameters that influence clinical outcomes in patients treated with novel oral anticancer therapies for hematologic malignancies. Future work will focus on trending patient responses over time to assess the role that these novel therapies play in overall patient wellbeing.