OBJECTIVES: To estimate annual out-of-pocket health expenditures of Leukemia and Lymphoma (L&L) adult patients in Portugal and to evaluate if these expenditures vary according to the treatment phase.

METHODS: This cross-sectional study was based on the application of a questionnaire, shared online, with the support of three national Patient Associations. Patients self-reported their out-of-pocket expenditures due to L&L, within four pre-defined categories: medications and pharmacy products, consultations (private sector), travelling costs to hospital, and alternative medicine, over the last 12 months. Independent t-test was used to explore differences in out-of-pocket health expenditures of patients according to treatment phase (in-treatment versus pre- or post-treatment), within each disease category.

RESULTS: 212 patients answered the questionnaire, between October-December 2022. Mean annual out-of-pocket expenditures by disease type were: 471€ (SD=588€) for chronic leukemia (n=53), 585€ (SD=613€) for Hodgkin's lymphoma (n=38), 670€ (SD=1256€) for non-Hodgkin’s lymphoma (n=84) and 762€ (SD=1,073€) for acute leukemia (n=37). Results showed that within all disease types, patients in-treatment had higher overall out-of-pocket health expenditures in comparison to patients pre- or post-treatment, however, this difference was only statistically significant for acute leukemia: 1455€ ± 412€ versus 415€ ± 130€, t(34)=-3.05, p<0.01. Travelling costs to hospital were responsible for most of the out-of-pocket expenditures, followed by medications, consultations, and alternative medicine, except for chronic leukemia, where the mean expenditures with private consultations were higher than those with medicines: 132€ (SD=359€) and 81€ (SD=161€), respectively. Differences in mean annual travelling costs to hospital for patients in-treatment versus pre- or post-treatment were statistically significant for acute leukemia and Hodgkin's lymphoma.

CONCLUSIONS: L&L patients in Portugal report significant out-of-pocket expenditures, especially during treatment. Travelling costs to hospital are the main cost drivers. Statistically significant differences for travelling costs were found for patients with acute leukemia and Hodgkin's lymphoma, for whom treatment options are not based in oral medications.