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

Autor: Bevan A; Wessex Adult Cystic Fibrosis Service, University Hospital Southampton NHS Foundation Trust, Southampton, UK., 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., Totton N; School of Health and Related Research (ScHARR), University of Sheffield, Sheffield, UK., Girling C; School of Health and Related Research (ScHARR), University of Sheffield, Sheffield, UK., Davids IR; School of Health and Related Research (ScHARR), University of Sheffield, Sheffield, UK., Whelan P; Centre for Health Informatics, University of Manchester, Manchester, UK., Antrobus S; Centre for Health Informatics, University of Manchester, Manchester, UK., Ainsworth J; Centre for Health Informatics, University of Manchester, Manchester, UK., Buchan I; Centre for Health Informatics, University of Manchester, Manchester, UK., Anderson A; Newcastle Adult Cystic Fibrosis Centre, The Newcastle upon Tyne Hospitals NHS Foundation Trust, Newcastle upon Tyne, UK., Bourke S; Newcastle Adult Cystic Fibrosis Centre, The Newcastle upon Tyne Hospitals NHS Foundation Trust, Newcastle upon Tyne, UK., Doe S; Newcastle Adult Cystic Fibrosis Centre, The Newcastle upon Tyne Hospitals NHS Foundation Trust, Newcastle upon Tyne, UK., Echevarria C; Newcastle Adult Cystic Fibrosis Centre, The Newcastle upon Tyne Hospitals NHS Foundation Trust, Newcastle upon Tyne, UK., Taylor J; Newcastle Adult Cystic Fibrosis Centre, The Newcastle upon Tyne Hospitals NHS Foundation Trust, Newcastle upon Tyne, UK., Bell NJ; Bristol Adult Cystic Fibrosis Centre, University Hospitals Bristol and Weston NHS Foundation Trust, Bristol, UK., Bateman K; Bristol Adult Cystic Fibrosis Centre, University Hospitals Bristol and Weston NHS Foundation Trust, Bristol, UK., Jones C; Bristol Adult Cystic Fibrosis Centre, University Hospitals Bristol and Weston NHS Foundation Trust, Bristol, UK., Moran P; Bristol Adult Cystic Fibrosis Centre, University Hospitals Bristol and Weston NHS Foundation Trust, Bristol, UK., Fitch G; North West Midlands Cystic Fibrosis Centre, University Hospitals of North Midlands NHS Trust, Stoke-on-Trent, UK., Martin M; North West Midlands Cystic Fibrosis Centre, University Hospitals of North Midlands NHS Trust, Stoke-on-Trent, UK., McGowan A; North West Midlands Cystic Fibrosis Centre, University Hospitals of North Midlands NHS Trust, Stoke-on-Trent, UK., Morrow S; North West Midlands Cystic Fibrosis Centre, University Hospitals of North Midlands NHS Trust, Stoke-on-Trent, UK., Seabridge H; North West Midlands Cystic Fibrosis Centre, University Hospitals of North Midlands NHS Trust, Stoke-on-Trent, UK., Bush N; York Hull Adult Cystic Fibrosis Centre, Hull University Teaching Hospitals NHS Trust, Hull, UK., Daniels T; York Hull Adult Cystic Fibrosis Centre, York Teaching Hospital NHS Foundation Trust, York, UK., Lee K; York Hull Adult Cystic Fibrosis Centre, York Teaching Hospital NHS Foundation Trust, York, UK., Robson N; York Hull Adult Cystic Fibrosis Centre, York Teaching Hospital NHS Foundation Trust, York, UK., Shiferaw D; York Hull Adult Cystic Fibrosis Centre, Hull University Teaching Hospitals NHS Trust, Hull, UK., Sweis D; York Hull Adult Cystic Fibrosis Centre, York Teaching Hospital NHS Foundation Trust, York, UK., Thomas R; York Hull Adult Cystic Fibrosis Centre, York Teaching Hospital NHS Foundation Trust, York, UK., Faulkner J; Oxford Adult Cystic Fibrosis Centre, Oxford University Hospitals NHS Foundation Trust, Oxford, UK., Flight WG; Oxford Adult Cystic Fibrosis Centre, Oxford University Hospitals NHS Foundation Trust, Oxford, UK., Poole S; Oxford Adult Cystic Fibrosis Centre, Oxford University Hospitals NHS Foundation Trust, Oxford, UK., Warnock L; Oxford Adult Cystic Fibrosis Centre, Oxford University Hospitals NHS Foundation Trust, Oxford, UK., Allenby MI; Wessex Adult Cystic Fibrosis Service, University Hospital Southampton NHS Foundation Trust, Southampton, UK., Carroll M; Wessex Adult Cystic Fibrosis Service, University Hospital Southampton NHS Foundation Trust, Southampton, UK; Respiratory Biomedical Research Centre, University of Southampton, Southampton, UK., Daniels TV; Wessex Adult Cystic Fibrosis Service, University Hospital Southampton NHS Foundation Trust, Southampton, UK; Respiratory Biomedical Research Centre, University of Southampton, Southampton, UK., Dunn H; Wessex Adult Cystic Fibrosis Service, University Hospital Southampton NHS Foundation Trust, Southampton, UK., Nightingale JA; Wessex Adult Cystic Fibrosis Service, University Hospital Southampton NHS Foundation Trust, Southampton, UK., Shepherd E; Wessex Adult Cystic Fibrosis Service, University Hospital Southampton NHS Foundation Trust, Southampton, UK., Ohri C; Leicester Adult Cystic Fibrosis Centre, University Hospitals of Leicester NHS Trust, Leicester, UK., Gadsby J; Leicester Adult Cystic Fibrosis Centre, University Hospitals of Leicester NHS Trust, Leicester, UK., Range S; Leicester Adult Cystic Fibrosis Centre, University Hospitals of Leicester NHS Trust, Leicester, UK., Tature D; Leicester Adult Cystic Fibrosis Centre, University Hospitals of Leicester NHS Trust, Leicester, UK., Barr HL; Wolfson Adult Cystic Fibrosis Centre, Nottingham University Hospitals NHS Trust, Nottingham, UK., Dawson S; Wolfson Adult Cystic Fibrosis Centre, Nottingham University Hospitals NHS Trust, Nottingham, UK., Dewar J; Wolfson Adult Cystic Fibrosis Centre, Nottingham University Hospitals NHS Trust, Nottingham, UK., Miller B; Wolfson Adult Cystic Fibrosis Centre, Nottingham University Hospitals NHS Trust, Nottingham, UK., Saini G; Wolfson Adult Cystic Fibrosis Centre, Nottingham University Hospitals NHS Trust, Nottingham, UK., Galey P; Adult Cystic Fibrosis Clinic, Norfolk and Norwich University Hospitals NHS Foundation Trust, Norwich, UK., Johnson J; Adult Cystic Fibrosis Clinic, Norfolk and Norwich University Hospitals NHS Foundation Trust, Norwich, UK., Pasteur MC; Adult Cystic Fibrosis Clinic, Norfolk and Norwich University Hospitals NHS Foundation Trust, Norwich, UK., Derry D; Derriford Hospital Adult Cystic Fibrosis Centre, University Hospitals Plymouth NHS Trust, Plymouth, UK., Gledhill H; Derriford Hospital Adult Cystic Fibrosis Centre, University Hospitals Plymouth NHS Trust, Plymouth, UK., Lawson A; Derriford Hospital Adult Cystic Fibrosis Centre, University Hospitals Plymouth NHS Trust, Plymouth, UK., Thomas M; Derriford Hospital Adult Cystic Fibrosis Centre, University Hospitals Plymouth NHS Trust, Plymouth, UK., Waine D; Derriford Hospital Adult Cystic Fibrosis Centre, University Hospitals Plymouth NHS Trust, Plymouth, UK., Cunningham J; Cystic Fibrosis Unit, Frimley Health NHS Foundation Trust, Frimley, UK., Damani A; Cystic Fibrosis Unit, Frimley Health NHS Foundation Trust, Frimley, UK., Higton A; Cystic Fibrosis Unit, Frimley Health NHS Foundation Trust, Frimley, UK., Orchard C; Cystic Fibrosis Unit, Frimley Health NHS Foundation Trust, Frimley, UK., Carolan C; Sheffield Adult Cystic Fibrosis Centre, Sheffield Teaching Hospitals NHS Foundation Trust, Sheffield, UK., Tahir M; Sheffield Adult Cystic Fibrosis Centre, Sheffield Teaching Hospitals NHS Foundation Trust, Sheffield, UK., Plummer A; Sheffield Adult Cystic Fibrosis Centre, Sheffield Teaching Hospitals NHS Foundation Trust, Sheffield, UK., Hutchings M; Sheffield Adult Cystic Fibrosis Centre, Sheffield Teaching Hospitals NHS Foundation Trust, Sheffield, UK., Edenborough FP; Sheffield Adult Cystic Fibrosis Centre, Sheffield Teaching Hospitals NHS Foundation Trust, Sheffield, UK., Curley R; Sheffield Adult Cystic Fibrosis Centre, Sheffield Teaching Hospitals NHS Foundation Trust, Sheffield, UK., 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.
Jazyk: angličtina
Zdroj: Journal of cystic fibrosis : official journal of the European Cystic Fibrosis Society [J Cyst Fibros] 2022 Mar; Vol. 21 (2), pp. 323-331. Date of Electronic Publication: 2021 Sep 23.
DOI: 10.1016/j.jcf.2021.09.007
Abstrakt: 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.
(Copyright © 2021. Published by Elsevier B.V.)
Databáze: MEDLINE