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. 2022 Mar;21(2):323-331.
doi: 10.1016/j.jcf.2021.09.007. Epub 2021 Sep 23.

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

Amanda Bevan  1 , Zhe Hui Hoo  2 , Nikki Totton  3 , Carla Girling  3 , India R Davids  3 , Pauline Whelan  4 , Steven Antrobus  4 , John Ainsworth  4 , Iain Buchan  4 , Alan Anderson  5 , Stephen Bourke  5 , Simon Doe  5 , Carlos Echevarria  5 , Jill Taylor  5 , Nicholas J Bell  6 , Kathryn Bateman  6 , Carys Jones  6 , Peter Moran  6 , Giles Fitch  7 , Michael Martin  7 , Angela McGowan  7 , Stephen Morrow  7 , Heather Seabridge  7 , Nicki Bush  8 , Tracey Daniels  9 , Katy Lee  9 , Nicola Robson  9 , Dejene Shiferaw  8 , Dimah Sweis  9 , Rebecca Thomas  9 , Jayne Faulkner  10 , William G Flight  10 , Sarah Poole  10 , Louise Warnock  10 , Mark I Allenby  1 , Mary Carroll  11 , Thomas V Daniels  11 , Helen Dunn  1 , Julia A Nightingale  1 , Elizabeth Shepherd  1 , Chandra Ohri  12 , Jessica Gadsby  12 , Simon Range  12 , Darren Tature  12 , Helen L Barr  13 , Sophie Dawson  13 , Jane Dewar  13 , Bryony Miller  13 , Gauri Saini  13 , Penny Galey  14 , Jack Johnson  14 , Mark C Pasteur  14 , David Derry  15 , Harriet Gledhill  15 , Angharad Lawson  15 , Michelle Thomas  15 , David Waine  15 , Josie Cunningham  16 , Annant Damani  16 , Alexandra Higton  16 , Christopher Orchard  16 , Charlotte Carolan  17 , Misbah Tahir  17 , Amanda Plummer  17 , Marlene Hutchings  17 , Frank P Edenborough  17 , Rachael Curley  17 , Martin J Wildman  18
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Free article

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

Amanda Bevan et al. J Cyst Fibros. 2022 Mar.
Free article

Erratum in

  • Corrigendum to "Using a learning health system to understand the mismatch between medicines supply and actual medicines use among adults with cystic fibrosis" [J Cyst Fibros (2022), 21/2, 323-331].
    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. Bevan A, et al. J Cyst Fibros. 2022 Sep;21(5):893-897. doi: 10.1016/j.jcf.2022.07.011. Epub 2022 Jul 28. J Cyst Fibros. 2022. PMID: 35907767 No abstract available.

Abstract

Background: 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.

Keywords: Adherence to therapy; Cost analysis; Cystic fibrosis; Measurement systems.

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