Cystic fibrosis patient characteristics and healthcare resource utilization in Finland using linked registries

•The prevalence of diagnosed CF in Finland (1.85/100,000) was low vs other countries•Due to the lack of newborn screening, only 60% of cases were diagnosed at age <2 years•The median age at death was lower in people with CF (31yrs) vs the Finnish population•Inpatient hospitalizations were >30 times more frequent in CF vs control population•In Finland, CF disease burden may improve with increased newborn screening and CFTRm therapy BackgroundKnowledge of prevalence and epidemiology of cystic fibrosis (CF) and healthcare resource use among Finnish people with CF is incomplete.MethodsWe conducted a population-based matched cohort study using retrospective real-world data from linked Finnish national registries. Electronic healthcare data and drug purchases of 102 people with CF were analyzed between January 2015 and December 2019 (follow-up). A 5-fold control population was matched by sex, age, and place of residence. Comorbidities and medication use that occurred at any time during follow-up were assessed; annual rates of hospital service use were adjusted for follow-up.ResultsThe prevalence of CF in Finland was 1.85 per 100,000. Median age at diagnosis was 1 year, with 60% diagnosed at age <2 years and 80% at age <10 years. Median age at death in people with CF was 31.4 years (n<5); no controls died. The most common comorbidities included chronic sinusitis (39.2%), pneumonia (38.2%), diabetes (20.6%), and nasal polyps (18.6%). The most purchased medications were antibiotics (99.0%) and pancreatic enzymes (84.3%). The annualized rate of hospital visits was higher in people with CF vs controls (outpatient: mean [SD], 17.4 [14.5] vs 0.9 [3.3]; median, 13.6 vs 0.4, respectively; inpatient: mean [SD], 1.0 [1.66] vs 0.03 [0.14]; median, 0.34 vs 0, respectively).ConclusionsThe prevalence of CF in Finland is remarkably low, likely reflecting unique population characteristics and, in part, delayed diagnosis. Antibiotic use is frequent among Finnish people with CF. Inpatient hospital visits are >30 times higher in people with CF than matched controls. Knowledge of prevalence and epidemiology of cystic fibrosis (CF) and healthcare resource use among Finnish people with CF is incomplete. We conducted a population-based matched cohort study using retrospective real-world data from linked Finnish national registries. Electronic healthcare data and drug purchases of 102 people with CF were analyzed between January 2015 and December 2019 (follow-up). A 5-fold control population was matched by sex, age, and place of residence. Comorbidities and medication use that occurred at any time during follow-up were assessed; annual rates of hospital service use were adjusted for follow-up. The prevalence of CF in Finland was 1.85 per 100,000. Median age at diagnosis was 1 year, with 60% diagnosed at age <2 years and 80% at age <10 years. Median age at death in people with CF was 31.4 years (n<5); no controls died. The most common comorbidities included chronic sinusitis (39.2%), pneumonia (38.2%), diabetes (20.6%), and nasal polyps (18.6%). The most purchased medications were antibiotics (99.0%) and pancreatic enzymes (84.3%). The annualized rate of hospital visits was higher in people with CF vs controls (outpatient: mean [SD], 17.4 [14.5] vs 0.9 [3.3]; median, 13.6 vs 0.4, respectively; inpatient: mean [SD], 1.0 [1.66] vs 0.03 [0.14]; median, 0.34 vs 0, respectively). The prevalence of CF in Finland is remarkably low, likely reflecting unique population characteristics and, in part, delayed diagnosis. Antibiotic use is frequent among Finnish people with CF. Inpatient hospital visits are >30 times higher in people with CF than matched controls.