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


Journal

Journal of cystic fibrosis : official journal of the European Cystic Fibrosis Society
ISSN: 1873-5010
Titre abrégé: J Cyst Fibros
Pays: Netherlands
ID NLM: 101128966

Informations de publication

Date de publication:
03 2022
Historique:
received: 22 04 2021
revised: 01 09 2021
accepted: 04 09 2021
pubmed: 28 9 2021
medline: 14 4 2022
entrez: 27 9 2021
Statut: ppublish

Résumé

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. 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. 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%. 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.

Sections du résumé

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.

Identifiants

pubmed: 34565705
pii: S1569-1993(21)01408-9
doi: 10.1016/j.jcf.2021.09.007
pii:
doi:

Types de publication

Journal Article Research Support, Non-U.S. Gov't

Langues

eng

Sous-ensembles de citation

IM

Pagination

323-331

Commentaires et corrections

Type : ErratumIn

Informations de copyright

Copyright © 2021. Published by Elsevier B.V.

Auteurs

Amanda Bevan (A)

Wessex Adult Cystic Fibrosis Service, University Hospital Southampton NHS Foundation Trust, Southampton, UK.

Zhe Hui Hoo (ZH)

School of Health and Related Research (ScHARR), University of Sheffield, Sheffield, UK; Sheffield Adult Cystic Fibrosis Centre, Sheffield Teaching Hospitals NHS Foundation Trust, Sheffield, UK.

Nikki Totton (N)

School of Health and Related Research (ScHARR), University of Sheffield, Sheffield, UK.

Carla Girling (C)

School of Health and Related Research (ScHARR), University of Sheffield, Sheffield, UK.

India R Davids (IR)

School of Health and Related Research (ScHARR), University of Sheffield, Sheffield, UK.

Pauline Whelan (P)

Centre for Health Informatics, University of Manchester, Manchester, UK.

Steven Antrobus (S)

Centre for Health Informatics, University of Manchester, Manchester, UK.

John Ainsworth (J)

Centre for Health Informatics, University of Manchester, Manchester, UK.

Iain Buchan (I)

Centre for Health Informatics, University of Manchester, Manchester, UK.

Alan Anderson (A)

Newcastle Adult Cystic Fibrosis Centre, The Newcastle upon Tyne Hospitals NHS Foundation Trust, Newcastle upon Tyne, UK.

Stephen Bourke (S)

Newcastle Adult Cystic Fibrosis Centre, The Newcastle upon Tyne Hospitals NHS Foundation Trust, Newcastle upon Tyne, UK.

Simon Doe (S)

Newcastle Adult Cystic Fibrosis Centre, The Newcastle upon Tyne Hospitals NHS Foundation Trust, Newcastle upon Tyne, UK.

Carlos Echevarria (C)

Newcastle Adult Cystic Fibrosis Centre, The Newcastle upon Tyne Hospitals NHS Foundation Trust, Newcastle upon Tyne, UK.

Jill Taylor (J)

Newcastle Adult Cystic Fibrosis Centre, The Newcastle upon Tyne Hospitals NHS Foundation Trust, Newcastle upon Tyne, UK.

Nicholas J Bell (NJ)

Bristol Adult Cystic Fibrosis Centre, University Hospitals Bristol and Weston NHS Foundation Trust, Bristol, UK.

Kathryn Bateman (K)

Bristol Adult Cystic Fibrosis Centre, University Hospitals Bristol and Weston NHS Foundation Trust, Bristol, UK.

Carys Jones (C)

Bristol Adult Cystic Fibrosis Centre, University Hospitals Bristol and Weston NHS Foundation Trust, Bristol, UK.

Peter Moran (P)

Bristol Adult Cystic Fibrosis Centre, University Hospitals Bristol and Weston NHS Foundation Trust, Bristol, UK.

Giles Fitch (G)

North West Midlands Cystic Fibrosis Centre, University Hospitals of North Midlands NHS Trust, Stoke-on-Trent, UK.

Michael Martin (M)

North West Midlands Cystic Fibrosis Centre, University Hospitals of North Midlands NHS Trust, Stoke-on-Trent, UK.

Angela McGowan (A)

North West Midlands Cystic Fibrosis Centre, University Hospitals of North Midlands NHS Trust, Stoke-on-Trent, UK.

Stephen Morrow (S)

North West Midlands Cystic Fibrosis Centre, University Hospitals of North Midlands NHS Trust, Stoke-on-Trent, UK.

Heather Seabridge (H)

North West Midlands Cystic Fibrosis Centre, University Hospitals of North Midlands NHS Trust, Stoke-on-Trent, UK.

Nicki Bush (N)

York Hull Adult Cystic Fibrosis Centre, Hull University Teaching Hospitals NHS Trust, Hull, UK.

Tracey Daniels (T)

York Hull Adult Cystic Fibrosis Centre, York Teaching Hospital NHS Foundation Trust, York, UK.

Katy Lee (K)

York Hull Adult Cystic Fibrosis Centre, York Teaching Hospital NHS Foundation Trust, York, UK.

Nicola Robson (N)

York Hull Adult Cystic Fibrosis Centre, York Teaching Hospital NHS Foundation Trust, York, UK.

Dejene Shiferaw (D)

York Hull Adult Cystic Fibrosis Centre, Hull University Teaching Hospitals NHS Trust, Hull, UK.

Dimah Sweis (D)

York Hull Adult Cystic Fibrosis Centre, York Teaching Hospital NHS Foundation Trust, York, UK.

Rebecca Thomas (R)

York Hull Adult Cystic Fibrosis Centre, York Teaching Hospital NHS Foundation Trust, York, UK.

Jayne Faulkner (J)

Oxford Adult Cystic Fibrosis Centre, Oxford University Hospitals NHS Foundation Trust, Oxford, UK.

William G Flight (WG)

Oxford Adult Cystic Fibrosis Centre, Oxford University Hospitals NHS Foundation Trust, Oxford, UK.

Sarah Poole (S)

Oxford Adult Cystic Fibrosis Centre, Oxford University Hospitals NHS Foundation Trust, Oxford, UK.

Louise Warnock (L)

Oxford Adult Cystic Fibrosis Centre, Oxford University Hospitals NHS Foundation Trust, Oxford, UK.

Mark I Allenby (MI)

Wessex Adult Cystic Fibrosis Service, University Hospital Southampton NHS Foundation Trust, Southampton, UK.

Mary Carroll (M)

Wessex Adult Cystic Fibrosis Service, University Hospital Southampton NHS Foundation Trust, Southampton, UK; Respiratory Biomedical Research Centre, University of Southampton, Southampton, UK.

Thomas V Daniels (TV)

Wessex Adult Cystic Fibrosis Service, University Hospital Southampton NHS Foundation Trust, Southampton, UK; Respiratory Biomedical Research Centre, University of Southampton, Southampton, UK.

Helen Dunn (H)

Wessex Adult Cystic Fibrosis Service, University Hospital Southampton NHS Foundation Trust, Southampton, UK.

Julia A Nightingale (JA)

Wessex Adult Cystic Fibrosis Service, University Hospital Southampton NHS Foundation Trust, Southampton, UK.

Elizabeth Shepherd (E)

Wessex Adult Cystic Fibrosis Service, University Hospital Southampton NHS Foundation Trust, Southampton, UK.

Chandra Ohri (C)

Leicester Adult Cystic Fibrosis Centre, University Hospitals of Leicester NHS Trust, Leicester, UK.

Jessica Gadsby (J)

Leicester Adult Cystic Fibrosis Centre, University Hospitals of Leicester NHS Trust, Leicester, UK.

Simon Range (S)

Leicester Adult Cystic Fibrosis Centre, University Hospitals of Leicester NHS Trust, Leicester, UK.

Darren Tature (D)

Leicester Adult Cystic Fibrosis Centre, University Hospitals of Leicester NHS Trust, Leicester, UK.

Helen L Barr (HL)

Wolfson Adult Cystic Fibrosis Centre, Nottingham University Hospitals NHS Trust, Nottingham, UK.

Sophie Dawson (S)

Wolfson Adult Cystic Fibrosis Centre, Nottingham University Hospitals NHS Trust, Nottingham, UK.

Jane Dewar (J)

Wolfson Adult Cystic Fibrosis Centre, Nottingham University Hospitals NHS Trust, Nottingham, UK.

Bryony Miller (B)

Wolfson Adult Cystic Fibrosis Centre, Nottingham University Hospitals NHS Trust, Nottingham, UK.

Gauri Saini (G)

Wolfson Adult Cystic Fibrosis Centre, Nottingham University Hospitals NHS Trust, Nottingham, UK.

Penny Galey (P)

Adult Cystic Fibrosis Clinic, Norfolk and Norwich University Hospitals NHS Foundation Trust, Norwich, UK.

Jack Johnson (J)

Adult Cystic Fibrosis Clinic, Norfolk and Norwich University Hospitals NHS Foundation Trust, Norwich, UK.

Mark C Pasteur (MC)

Adult Cystic Fibrosis Clinic, Norfolk and Norwich University Hospitals NHS Foundation Trust, Norwich, UK.

David Derry (D)

Derriford Hospital Adult Cystic Fibrosis Centre, University Hospitals Plymouth NHS Trust, Plymouth, UK.

Harriet Gledhill (H)

Derriford Hospital Adult Cystic Fibrosis Centre, University Hospitals Plymouth NHS Trust, Plymouth, UK.

Angharad Lawson (A)

Derriford Hospital Adult Cystic Fibrosis Centre, University Hospitals Plymouth NHS Trust, Plymouth, UK.

Michelle Thomas (M)

Derriford Hospital Adult Cystic Fibrosis Centre, University Hospitals Plymouth NHS Trust, Plymouth, UK.

David Waine (D)

Derriford Hospital Adult Cystic Fibrosis Centre, University Hospitals Plymouth NHS Trust, Plymouth, UK.

Josie Cunningham (J)

Cystic Fibrosis Unit, Frimley Health NHS Foundation Trust, Frimley, UK.

Annant Damani (A)

Cystic Fibrosis Unit, Frimley Health NHS Foundation Trust, Frimley, UK.

Alexandra Higton (A)

Cystic Fibrosis Unit, Frimley Health NHS Foundation Trust, Frimley, UK.

Christopher Orchard (C)

Cystic Fibrosis Unit, Frimley Health NHS Foundation Trust, Frimley, UK.

Charlotte Carolan (C)

Sheffield Adult Cystic Fibrosis Centre, Sheffield Teaching Hospitals NHS Foundation Trust, Sheffield, UK.

Misbah Tahir (M)

Sheffield Adult Cystic Fibrosis Centre, Sheffield Teaching Hospitals NHS Foundation Trust, Sheffield, UK.

Amanda Plummer (A)

Sheffield Adult Cystic Fibrosis Centre, Sheffield Teaching Hospitals NHS Foundation Trust, Sheffield, UK.

Marlene Hutchings (M)

Sheffield Adult Cystic Fibrosis Centre, Sheffield Teaching Hospitals NHS Foundation Trust, Sheffield, UK.

Frank P Edenborough (FP)

Sheffield Adult Cystic Fibrosis Centre, Sheffield Teaching Hospitals NHS Foundation Trust, Sheffield, UK.

Rachael Curley (R)

Sheffield Adult Cystic Fibrosis Centre, Sheffield Teaching Hospitals NHS Foundation Trust, Sheffield, UK.

Martin J Wildman (MJ)

School of Health and Related Research (ScHARR), University of Sheffield, Sheffield, UK; Sheffield Adult Cystic Fibrosis Centre, Sheffield Teaching Hospitals NHS Foundation Trust, Sheffield, UK. Electronic address: martin.wildman3@nhs.net.

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