The Direct Healthcare Cost of Stargardt Disease: A Claims-Based Analysis

Kanza Aziz, Bonnielin K. Swenor, Joseph K. Canner, Mandeep S. Singh

Research output: Contribution to journalArticlepeer-review


Purpose: Stargardt disease (SD) is the most common juvenile macular degeneration and a leading cause of uncorrectable childhood blindness. The progressive and incurable nature of this chronic condition entails a long-term financial burden on affected individuals. The economic costs of SD have not been characterized in detail, so we aimed to estimate the direct healthcare cost of SD. Methods: Outpatient administrative claims data (2010–2014) for patients with SD were analyzed from the IBM® MarketScan® Commercial Claims and Encounters Database. Two comparison groups were selected: nonexudative age-related macular degeneration (AMD) and bilateral sensorineural hearing loss (SHL). Gross median payments per year of insurance coverage were calculated. Results: A total of 472,428 patients were analyzed (5,015 SD, 369,750 SHL and 97,663 AMD patients respectively). The payment per year of insurance coverage for SD (median: 105.58 USD, IQR: 50.53 USD–218.71 USD) was higher than that of SHL (median: 51.01 USD, IQR: 25.66 USD–121.66 USD, p < .001) and AMD (median: 76.20 USD, IQR: 38.00 USD–164.86 USD, p < .001). When adjusted for age, sex, year of first service, and type of benefit plan, the annual payment for SD was 47.83 USD higher than SHL (p < .001) and 17.34 USD higher than AMD (p < .001). Conclusions: There is a significant direct healthcare cost associated with SD. The annual per-patient cost of SD was higher than SHL, another condition that causes sensory impairment in people of all ages, and nonexudative AMD which causes a similar pattern of visual loss that typically begins later in life. The total lifetime per-patient cost of SD may exceed that of nonexudative AMD.

Original languageEnglish (US)
Pages (from-to)533-539
Number of pages7
JournalOphthalmic Epidemiology
Issue number6
StatePublished - 2021


  • Inherited retinal diseases
  • Low vision
  • Macular degeneration
  • Orphan disease
  • Visual rehabilitation

ASJC Scopus subject areas

  • Epidemiology
  • Ophthalmology


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