Social and Economic Burden Among Patients With Inherited Retinal Disease: A Nationwide Matched Cohort Study in Sweden 2001-2021
Author(s)
Muwada Bashir awad Bashir, MPH, PhD1, Henrike Häbel, PhD2, Azadeh Chizarifard, PhD3, Ying Qu, PhD4, Qiaoyi Zhang, MS, PhD, MD5, Abayomi Ogundele, PharmD6, Adina L. Feldman, PhD7, Stefan Löfgren, MD8.
1Department of clinical neuroscience, Karolinska Institute, Stockholm, Sweden, 2Department of Learning, Informatics, Management and Ethics, Karolinska institute, Stockholm, Sweden, 3Department of Learning, Informatics, Management and Ethics, Karolinska Insitutet, Stockholm, Sweden, 4Global Commercial Strategy Organization (GCSO), Janssen-Cilag AB, Stockholm, Sweden, 5Global Commercial Strategy Organization (GCSO), Johnson & Johnson Innovative Medicine, Raritan, Annandale, NJ, USA, 6Global Commercial Strategy Organization (GCSO), Johnson & Johnson Innovative Medicine, Raritan, NJ, USA, 7Department of clinical neuroscience, Intervention and Technology, karolinska Institute, Stockholm, Sweden, 8St. Erik Eye Hospital, Karolinska institute, Stockholm, Sweden.
1Department of clinical neuroscience, Karolinska Institute, Stockholm, Sweden, 2Department of Learning, Informatics, Management and Ethics, Karolinska institute, Stockholm, Sweden, 3Department of Learning, Informatics, Management and Ethics, Karolinska Insitutet, Stockholm, Sweden, 4Global Commercial Strategy Organization (GCSO), Janssen-Cilag AB, Stockholm, Sweden, 5Global Commercial Strategy Organization (GCSO), Johnson & Johnson Innovative Medicine, Raritan, Annandale, NJ, USA, 6Global Commercial Strategy Organization (GCSO), Johnson & Johnson Innovative Medicine, Raritan, NJ, USA, 7Department of clinical neuroscience, Intervention and Technology, karolinska Institute, Stockholm, Sweden, 8St. Erik Eye Hospital, Karolinska institute, Stockholm, Sweden.
OBJECTIVES: Inherited retinal diseases (IRDs) are often early-onset visual impairments associated with long-term social and economic challenges. Evidence on their population-level impact remains limited. This study evaluated associations between IRD and key social outcomes, including unemployment, education, income, absence from work due to sickness and marital status.
METHODS: A retrospective matched cohort study was conducted using Swedish national registers from 2001 to 2021. Adults with IRD (n = 6,058) were matched 1:10 with population controls (N = 66,527) by age, sex, and region. Incidence rates per 1,000 person-years were calculated. Poisson and ordered logistic regression models estimated adjusted incidence rate ratios (IRRs) and odds ratios (ORs). A parallel analysis examined educational outcomes among children with IRD (n = 10,597).
RESULTS: Among adults, IRD was associated with increased risks of unemployment due to health reasons (IRR, 1.25; 95% CI, 1.11-1.42), sickness absence (IRR, 1.04; 95% CI, 1.00-1.08), and long-term sickness absence (>14 days) (IRR, 1.28; 95% CI, 1.23-1.34). Higher risks were also observed for completing only primary education (IRR, 1.25; 95% CI, 1.03-1.51), low income (IRR, 1.17; 95% CI, 1.14-1.21), and illness compensation (IRR, 1.62; 95% CI, 1.44-1.82). Adults with IRD were less likely to be married (IRR, 0.97; 95% CI, 0.96-0.99) or reach higher income levels (IRR, 0.67; 95% CI, 0.64-0.70). No differences were found for overall unemployment or secondary education. Among children, IRD was linked to increased risk of completing only primary education (IRR, 1.63; 95% CI, 1.03-2.55).
CONCLUSIONS: IRD was consistently associated with adverse social outcomes, including greater risk of health-related unemployment, prolonged sickness absence from work, low income, and lower educational attainment. These disparities were evident in both adults and children, underscoring the need for early targeted interventions to address the long-term socioeconomic burden linked to IRD.
METHODS: A retrospective matched cohort study was conducted using Swedish national registers from 2001 to 2021. Adults with IRD (n = 6,058) were matched 1:10 with population controls (N = 66,527) by age, sex, and region. Incidence rates per 1,000 person-years were calculated. Poisson and ordered logistic regression models estimated adjusted incidence rate ratios (IRRs) and odds ratios (ORs). A parallel analysis examined educational outcomes among children with IRD (n = 10,597).
RESULTS: Among adults, IRD was associated with increased risks of unemployment due to health reasons (IRR, 1.25; 95% CI, 1.11-1.42), sickness absence (IRR, 1.04; 95% CI, 1.00-1.08), and long-term sickness absence (>14 days) (IRR, 1.28; 95% CI, 1.23-1.34). Higher risks were also observed for completing only primary education (IRR, 1.25; 95% CI, 1.03-1.51), low income (IRR, 1.17; 95% CI, 1.14-1.21), and illness compensation (IRR, 1.62; 95% CI, 1.44-1.82). Adults with IRD were less likely to be married (IRR, 0.97; 95% CI, 0.96-0.99) or reach higher income levels (IRR, 0.67; 95% CI, 0.64-0.70). No differences were found for overall unemployment or secondary education. Among children, IRD was linked to increased risk of completing only primary education (IRR, 1.63; 95% CI, 1.03-2.55).
CONCLUSIONS: IRD was consistently associated with adverse social outcomes, including greater risk of health-related unemployment, prolonged sickness absence from work, low income, and lower educational attainment. These disparities were evident in both adults and children, underscoring the need for early targeted interventions to address the long-term socioeconomic burden linked to IRD.
Conference/Value in Health Info
2025-11, ISPOR Europe 2025, Glasgow, Scotland
Value in Health, Volume 28, Issue S2
Code
P49
Topic
Economic Evaluation, Epidemiology & Public Health, Real World Data & Information Systems
Topic Subcategory
Public Health