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Using a learning health system to understand the mismatch between medicines supply and actual medicines use among adults with cystic fibrosis

Lookup NU author(s): Professor Stephen BourkeORCiD, Dr Simon Doe, Dr Carlos EchevarriaORCiD


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© 2021Background: Studies in separate cohorts suggest possible discrepancies between inhaled medicines supplied (median 50-60%) and medicines used (median 30-40%). We performed the first study that directly compares CF medicine supply against use to identify the cost of excess medicines supply. Methods: This cross-sectional study included participants from 12 UK adult centres with ≥1 year of continuous adherence data from data-logging nebulisers. Medicine supply was measured as medication possession ratio (MPR) for a 1-year period from the first suitable supply date. Medicine use was measured as electronic data capture (EDC) adherence over the same period. The cost of excess medicines was calculated as whole excess box(es) supplied after accounting for the discrepancy between EDC adherence and MPR with 20% contingency. Results: Among 275 participants, 133 (48.4%) were females and mean age was 30 years (95% CI 29-31 years). Median EDC adherence was 57% (IQR 23-86%), median MPR was 74% (IQR 46-96%) and the discrepancy between measures was median 14% (IQR 2-29%). Even with 20% contingency, mean potential cost of excess medicines was £1,124 (95% CI £855-1,394), ranging from £183 (95% CI £29-338) for EDC adherence ≥80% to £2,017 (95% CI £1,507-2,526) for EDC adherence <50%. Conclusions: This study provides a conservative estimate of excess inhaled medicines supply cost among adults with CF in the UK. The excess supply cost was highest among those with lowest EDC adherence, highlighting the importance of adherence support and supplying medicine according to actual use. MPR provides information about medicine supply but over-estimates actual medicine use.

Publication metadata

Author(s): Bevan A, Hoo ZH, Totton N, Girling C, Davids IR, Whelan P, Antrobus S, Ainsworth J, Buchan I, Anderson A, Bourke S, Doe S, Echevarria C, Taylor J, Bell NJ, Bateman K, Jones C, Moran P, Fitch G, Martin M, McGowan A, Morrow S, Seabridge H, Bush N, Daniels T, Lee K, Robson N, Shiferaw D, Sweis D, Thomas R, Faulkner J, Flight WG, Poole S, Warnock L, Allenby MI, Carroll M, Daniels TV, Dunn H, Nightingale JA, Shepherd E, Ohri C, Gadsby J, Range S, Tature D, Barr HL, Dawson S, Dewar J, Miller B, Saini G, Galey P, Johnson J, Pasteur MC, Derry D, Gledhill H, Lawson A, Thomas M, Waine D, Cunningham J, Damani A, Higton A, Orchard C, Carolan C, Tahir M, Plummer A, Hutchings M, Edenborough FP, Curley R, Wildman MJ

Publication type: Article

Publication status: Published

Journal: Journal of Cystic Fibrosis

Year: 2021

Volume: 21

Issue: 2

Pages: 323-331

Print publication date: 01/03/2022

Online publication date: 23/09/2021

Acceptance date: 04/09/2021

ISSN (print): 1569-1993

ISSN (electronic): 1873-5010

Publisher: Elsevier B.V.


DOI: 10.1016/j.jcf.2021.09.007


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