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Background: We studied the health care resource utilization (HCRU) and associated costs in the year preceding LT in pwCF or death without LT, and we estimated the overall cost of LT., Methods: We performed a linkage between 2006 and 2017 data from the French CF Registry (FCFR) and the French health claims database (Système National des Données de Santé; SNDS). The HCRU and associated costs were described the year before LT or before death without LT, and two years after LT., Results: Among the 7,671 patients included in the FCFR, 6,187 patients (80.7 %) were successfully matched to patients in the SNDS (males (m): 51.9 %, mean±SD age at the end of follow-up: 24.6 ± 13.6). Overall, 166 patients died without LT (m: 47.6 %, age at death: 30.4 ± 14.5) and 767 patients with primary LT (m: 48.2 %, age at transplantation: 28.0 ± 9.1) were identified. HCRU was lower among patients who died without receiving LT, with marked differences in the cost of hospital stays. The mean total cost per patient was €66,759 ± 38,249 in the year before death, €149,374 ± 62,678 in the year preceding LT, €63,919 ± 35,399 in the first year following LT, and €42,813 ± 39,967 in the second year of follow-up., Conclusion: Our results indicate that HCRU was two times lower in the year before death in non-transplant pwCF than in the year before LT, which may reflect inappropriate care of CF in patients who died without receiving LT. It also shows the cost associated with LT., Competing Interests: Declaration of competing interest The authors declare the following financial interests/personal relationships which may be considered as potential competing interests: Isabelle Durieu reports financial support was provided by Vaincre la Mucoviscidose. Isabelle Durieu reports travel reimbursement was provided by Mylan. Eric Van Ganse reports financial support was provided by PELyon. Eric Van Ganse reports a relationship with PELyon that includes: consulting or advisory. Eric Van Ganse reports a relationship with AstraZeneca that includes: travel reimbursement. Marie Viprey reports a relationship with EPI-PHARE that includes: funding grants. Pierre-Régis Burgel reports a relationship with GSK that includes: consulting or advisory and funding grants. Pierre-Régis Burgel reports a relationship with Vertex that includes: consulting or advisory and funding grants. Pierre-Régis Burgel reports a relationship with AstraZeneca that includes: consulting or advisory and travel reimbursement. Pierre-Régis Burgel reports a relationship with Chiesi that includes: consulting or advisory and travel reimbursement. Pierre-Régis Burgel reports a relationship with Insmed that includes: consulting or advisory. Pierre-Régis Burgel reports a relationship with Viatris that includes: consulting or advisory. Pierre-Régis Burgel reports a relationship with Zambon that includes: consulting or advisory. M. Belhassen, M. Bérard, and E. Guyot are full-time employees of PELyon. C. Dehillotte, L. Lemonnier and Q. Reynaud have nothing to disclose., (Copyright © 2024 European Cystic Fibrosis Society. Published by Elsevier B.V. All rights reserved.) more...

Background: Better insights into the natural course of cystic fibrosis (CF) have led to treatment approaches that have improved pulmonary health and increased the life expectancy of affected individuals. This study evaluated how the combination of modified demographics and changes in CF management impacted resource consumption and the cost of care., Methods: Medical records of CF patients from 2006 to 2016 in the French CF Registry were linked to their corresponding claims data (SNDS). Medications, medical visits, procedures, hospitalisations, and indirect costs were annualized by calendar year from 2006 to 2017., Results: Of the 7,671 patients included in the French CF Registry, 6,187 patients (80.7%) were linked to the SNDS (51.9% male, mean age = 24.7 years). The average cost per patient was €14,174 in 2006, €21,920 in 2011 and €44,585 in 2017. Costs associated with hospital stays increased from €3,843 per patient in 2006 to €6,741 in 2017. In 2017, the mean cost per CF patient was allocated as follows: 72% for medications (of which 51% for modulator therapies), 15% for hospital stays, 7% for medical visits, 3% for indirect costs, 2% for medical devices, 1% for outpatient medical procedures., Conclusion: There was a strong increase in the mean annual cost per CF patient between 2006 and 2017, mostly due to the cost of therapy after the introduction of cystic fibrosis transmembrane conductance regulator (CFTR) modulators. The combination of an increase in the number of CF patients - particularly adult patients - and an increase in the annual cost per patient led to a substantial increase in the total cost of CF disease care for the health systems., Competing Interests: Declaration of Competing Interest F. Dalon, M. Bérard and M. Belhassen are full-time employees of PELyon. D. Walther was full-time employee of PELyon at the time of the study. E. Van Ganse is the scientific advisor and shareholder of PELyon. I. Durieu, Q. Reynaud, M. Viprey, L. Lemonnier and C. Dehillotte have nothing to disclose., (Copyright © 2021. Published by Elsevier B.V.) more...