OBJECTIVES: Inherited retinal diseases (IRDs), which affect ~4.5 million people worldwide, are a diverse group of progressive conditions that can lead to significant vision impairment and blindness. IRD patients often need formal homecare, which is associated with high costs for patients and society. Evaluating resource utilization (e.g., homecare) and associated socioeconomic costs is important for understanding the impact of disease.

METHODS: In a longitudinal cohort study using Swedish national register data, we investigated homecare use among IRD patients (ICD-10 H355 recorded at least twice). Homecare is part of the Swedish national care system and recorded in registers. We used multivariable logistic and Poisson regression models to compare homecare use among IRD patients.

RESULTS: We identified 3557 IRD patients for the period 2001-2021, of whom 970 (27.3%) used homecare during 2013-2021. Patients who used homecare were older at diagnosis (p<0.001), a greater proportion were women (p<0.001), and they had a longer disease duration (p<0.001), compared to those who did not use homecare. In logistic regression models, patients aged ≥61 at diagnosis (OR=12.17, 95% CI 9.09, 16.29) and those diagnosed earlier (2001—2005) (OR=2.87, 95% CI 2.31, 3.56) had higher odds of homecare use. In Poisson regression models, homecare use was associated with mortality, independent of age and sex (IRR=1.39, 95% CI 1.20, 1.61). Compared to the total older Swedish population (≥65), 11% of whom used homecare, 36% of older IRD patients (≥61) used homecare.

CONCLUSIONS: Homecare use was common among IRD patients and was associated with mortality, independent of patient’s age and sex. Older IRD patients and those diagnosed earlier, perhaps indicating more severe vision impairment, had greater odds of homecare use. These findings suggest that IRD patients have a significant need for homecare, which may place a burden on the care system and impact individual and societal economy.