To characterize the socioeconomic impact of glioma patients who had completed treatment, and were stable, using the standardized Medical Expenditure Panel Survey – Household Component (MEPS-HC).

Gliomas are rare but exhibit disproportionately higher morbidity and mortality than other cancers.  CNS tumors have the highest initial per-patient cost of any malignancy. Direct medical costs from a payer perspective have been described, but there is a paucity of data reflecting patient perspectives and long-term financial implications of glioma survivorship.

The MEPS-HC questionnaire was utilized to investigate the degree of economic hardship related to the patient’s brain tumor, its treatment, and the lasting effects of the disease/treatment on patients and their caregivers. Descriptive statistics were used to characterize variables and between-group comparisons were evaluated using a Fisher’s exact test.

89 out of 107 survivors completed the survey (response rate = 85%, female =52%, 40% high grade, 60% low grade). Patients with a gross-total resection (GTR) at initial surgery were less likely to report ongoing limitations in daily activities (45% v. 83%, p=0.004). Financial burden and workforce morbidity were insensitive to tumor location, laterality, and household income. The majority of survivors were insured at the time of diagnosis (91%), married (76%), and employed (79%) with household incomes reflecting the national average. 24% incurred debt referable to brain tumor care, 53% required extended unpaid time off, 46% retired or were no longer working. Direct, non-medical costs were driven by transportation (49%) and lodging (19%). 

Stable glioma survivors that are not on active treatment continue to be significantly impacted by direct medical costs, direct non-medical costs, and indirect costs associated with their brain tumor and concomitant treatment.  Financial burden and workforce morbidity was ubiquitous across all tumor subtypes, treatment paradigms, and income levels. Those with GTR were less likely to report ongoing limitations.