A1 Refereed original research article in a scientific journal
Cystic fibrosis patient characteristics and healthcare resource utilization in Finland using linked registries
Authors: Malmivaara, Kirsi; Pölkki, Mari; Prami, Tuire; Raittinen, Paavo; Heikkilä, Eija; Aalto, Antti; Dunder, Teija; Elenius, Varpu; Sandström, Kristina; McGarry, Lisa J.
Publisher: Elsevier
Publication year: 2024
Journal: Heliyon
Journal name in source: Heliyon
Article number: e33439
Volume: 10
Issue: 13
eISSN: 2405-8440
DOI: https://doi.org/10.1016/j.heliyon.2024.e33439
Self-archived copy’s web address: https://research.utu.fi/converis/portal/detail/Publication/457062165
Background Knowledge of prevalence and epidemiology of cystic fibrosis (CF) and healthcare resource use among Finnish people with CF is incomplete. Methods 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. Results 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). Conclusions 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.
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Funding information in the publication:
This study was supported by Vertex Pharmaceuticals Incorporated. Sponsor-affiliated authors of this manuscript were involved in the study design, analyses, and interpretation of the results, with collaboration from the other authors.