The Cost of Care: Quantifying Financial Toxicity Among Patients With Endometriosis

INTRODUCTION: Endometriosis is a chronic gynecologic condition that often requires numerous medical and surgical interventions, leading to substantial physical, emotional, and financial burdens. Financial toxicity is defined as the negative impact of the cost of treatment and care on a person's quality of life. Originally validated as a patient-reported outcome for cancer patients, the COmprehensive Score for Toxicity (COST) encompasses both objective financial burden and subjective financial distress experienced by patients as a result of their illness and associated treatments. Despite its relevance, no studies have examined financial toxicity in benign gynecology. Understanding financial toxicity in this population is critical to inform patient-centered care and reduce barriers to timely management. OBJECTIVE: The objective of this study is to characterize financial toxicity in patients with endometriosis and define associated factors. METHODS: Patients from an urban academic gynecologic practice with a surgical diagnosis of endometriosis were surveyed at their postoperative or follow-up appointments between January and September 2025. The survey included the COST tool, demographic questions, treatment, and Endometriosis Health Profile-5 (EHP-5). Severe financial toxicity was defined as a COST score of ≤13 and moderate financial toxicity as a score of 14–25, consistent with prior literature. Associations between groups were evaluated using chi-square or Fisher’s exact tests for categorical variables, and t-tests or Wilcoxon rank-sum tests for continuous variables; correlations were assessed using Spearman’s ρ. RESULTS: Seventy-seven patients were included, with a mean age of 35 years (range 21–53). The majority were White (71%), privately insured (82%), and had at least a bachelor’s degree (69%). Mean age at symptom onset was 20.8 years, and mean age at diagnosis was 33.8 years. Most patients (77%) agreed that discussing treatment costs was important, and 26% reported delaying care due to financial concerns. COST scores ranged from 1 to 42 (mean 20.6); 24% of participants experienced severe financial toxicity, and 65% had moderate or severe financial toxicity. Severe financial toxicity was associated with public insurance (p=.002), income <$60,000 (p=.002), lower educational attainment (p=.049), delaying care due to cost (p=.008), a self-reported history of using more than five medical treatment types (p=.008), and a higher number of providers seen (p=0.016). Financial toxicity was negatively correlated with endometriosis-related quality of life (Spearman ρ=–0.46, p<0.001; Figure 1). CONCLUSIONS: Severe financial toxicity affects nearly one-quarter of patients with endometriosis, and is linked to lower income, public insurance, higher healthcare use, and delayed care. Severe or moderate financial toxicity was more common in patients with endometriosis than have been previously reported in patients with gynecologic cancers. Financial toxicity is also associated with poorer quality of life, underscoring the need to address cost concerns and streamlining of care in patient-centered management.Figure 1