Background: Despite numerous studies exploring the monetary costs of lymphedema, there remains a gap in our understanding of treatment-induced distress, or “financial toxicity” (FT), in lymphedema patients. This study aims to (1) categorize FT in our cohort, (2) evaluate current disparities in lymphedema care using Area-Deprivation Index (ADI), and (3) identify the association between FT and lymphedema disease progression.
Methods: This is a single-institution prospective study of adult patients with chronic lymphedema. Surveys were administered at the time of evaluation in our multidisciplinary lymphedema clinic. FT was measured using an adaptation of the comprehensive 11-item COST-FACIT instrument. A secondary-cost survey was distributed to obtain specific lymphedema spending history.
Results: 54 patients were interviewed and 50 met the inclusion criteria for the final analysis. 25 patients (50%) had upper-extremity lymphedema, 22 (44%) had lower-extremity lymphedema, and 3 (6%) had trunk lymphedema; all patients with upper-extremity lymphedema were breast-cancer related lymphedema. Patients with Stage 3 lymphedema had the lowest COST-FACIT scores (indicating higher FT) of 18.50, compared to lower disease stages (0, 1, and 2) which results in higher COST-FACIT scores (indicating lower FT; 21, 24.6, and 25.08, respectively). Patients from higher ADI neighborhoods (indicating most disadvantaged) were significantly strongly associated with lower COST-FACIT scores (indicating higher FT) compared to those from lower ADI neighborhoods (indicating least disadvantaged; p=0.0003). Patients with lower COST-FACIT scores (indicating higher FT) were significantly correlated with having a higher level of patient-reported disability on the LLIS (p=0.0001).
Conclusions: Solely evaluating the monetary aspect of lymphedema care fails to unveil the "true cost" burden of this chronically debilitating disease for patients. Patients from highly disadvantaged neighborhoods are more likely to experience FT, have more advanced lymphedema staging, and report higher levels of disability.
