Longitudinal analysis of health care costs in patients with childhood onset inherited retinal dystrophies compared to healthy controls

• Published in: BMC ophthalmology Vol. 22; no. 1; p. 466
• Main Authors: Kessel, Line, Kjellberg, Jakob, Ibsen, Rikke, Rasmussen, Annette, Nissen, Kamilla Rothe, la Cour, Morten
• Format: Journal Article
• Language: English
• Published: England BioMed Central Ltd 02-12-2022; BioMed Central; BMC
• Subjects: Adolescent; Adult; Age groups; Ambulatory Care; Analysis; Blindness; Child; Child, Preschool; Childhood visual impairment; Children; Clinical trials; Clinics; Codes; Disease; Drugs; Economic aspects; Health Care Costs; Health care costs. Injury; Health care expenditures; Health care industry; Health care policy; Health Expenditures; Humans; Infant; Infant, Newborn; Inherited retinal dystrophy; Medical care, Cost of; Middle Aged; Ophthalmology; Patients; Personal grooming; Prescribing; Prescription drugs; Psychiatric hospital care; Psychiatric hospitals; Psychologists; Retina; Retinal Dystrophies - genetics; Variables; Visual impairment; Visually Impaired Persons; Young Adult; Denmark; Inherited retinal dystrophy; Health care costs. Injury; Childhood visual impairment
• ISSN: 1471-2415; 1471-2415
• DOI: 10.1186/s12886-022-02708-0

We evaluated health care costs in patients with childhood onset visual impairment caused by inherited retinal dystrophies (IRD).
The IRD cohort, identified from the Danish Registry of Blind and Partially Sighted Children, was compared to age- and sex-matched controls from the national, Danish population registry. Information on health care expenditures for somatic and psychiatric in- and outpatient services, purchase of prescription medications and paid assistance at home were obtained from national registries for the years 2002-2017.
We included 412 in the IRD cohort (6,290 person years) and 1656 (25,088 person years) in the control cohort. Average, annual health care expenditures from age 0-48 years of age were €1,488 (SD 4,711) in the IRD cohort and €1,030 (4,639) in the control cohort. The largest difference was for out-patient eye care (13.26 times greater, 95% confidence interval 12.90-13.64). Psychiatric in-patient expenditures were 1.71 times greater (95% CI 1.66-1.76) in the IRD cohort but psychiatric out-patient health care costs were comparable between groups.
Health care costs were approximately 40% greater in the IRD cohort compared to an age- and sex-matched sample from the general Danish population. This is relevant in the current situation with a number of trials aimed at treating IRDs using genetically based therapies. Although eye care expenditures were many times greater, they made up < 10% of the total health care expenditures even in the IRD cohort. The reduced costs related to injuries in the visually impaired cohort was a surprising finding but may reflect a reduced propensity to seek medical care rather than a reduced risk of injuries.