OBJECTIVES: TED is an autoimmune condition characterized by inflammation and damage to orbital tissues, vision problems, and appearance-related well-being. We investigated the economic and humanistic burden associated with TED which is not fully characterized in the literature.

METHODS: Two SLRs adhering to PRISMA guidelines examined evidence from eight databases from the last 10 years without geographic limits. Conference proceedings were searched for the last 3 years; HTA databases and bibliography searches supplemented the results.

RESULTS: 9 economic and 65 humanistic studies were identified indicating a paucity of healthcare resource utilization (HCRU), costs or economic outcomes data for TED, with 6/9 publications being abstracts. Results demonstrated that direct costs increased with disease severity, and indirect costs were greater in TED compared to autoimmune thyroid diseases and other autoimmune diseases. HCRU was driven by outpatient visits, including ophthalmologist and endocrinologist appointments. Of the 65 humanistic studies, 63 reported quality of life (QoL)/patient-reported outcomes and 2 reported utility. QoL was lower among patients with TED compared to healthy populations or those with Graves' disease (8/10). Disease activity (4/6) and increased disease severity (5/7) were associated with poorer GO-QoL visual function (VF). Across all studies, lower medians [range] were noted in GO-QoL VF and appearance (AP) scores in moderate-to-severe (VF: 60.8 [4.15-79.3]; AP: 50.13 [2.50-84.1]) compared to mild populations (VF: 83.5 [61.78-87.6]; AP: 66.3 [58.99-69.7]). Lower medians were reported in active (VF: 53.1 [4.21-74.2]; AP: 48.61 [2.50-84.1]) versus inactive populations (VF: 58.6 [4.15-85.7]; AP 56.1 [2.65-69.0]).

CONCLUSIONS: There is a significant economic and humanistic burden associated with TED. Despite limited data, increased disease severity was associated with higher economic burden and lower QoL. Patients with TED had lower QoL compared to the general population, and those with higher disease activity and disease severity had worsened GO-QoL.