Trends and variation in issuance of high‐cost narcolepsy drugs by
                    NHS
                    England organisations and regions from 2019 to 2022

Frederick van Someren; Milan Wiedemann; Charlotte Warren‐Gash; Martina Sykorova; Hema Mistry; Michelle A. Miller; Guy Leschziner; Ellen Nolte; Aurélien Belot; IAN E. SMITH; Tim Quinnell; Sofia H. Eriksson; Helen Strongman

doi:10.1111/jsr.14415

journal article Open Access Dec 08, 2024

Trends and variation in issuance of high‐cost narcolepsy drugs by NHS England organisations and regions from 2019 to 2022

Frederick van Someren

Milan Wiedemann Charlotte Warren‐Gash Martina Sykorova

Hema Mistry Michelle A. Miller Guy Leschziner Ellen Nolte

Aurélien Belot IAN E. SMITH Tim Quinnell Sofia H. Eriksson Helen Strongman

Journal of Sleep Research Vol. 34 No. 4 · Wiley

View at Publisher Save 10.1111/jsr.14415

Abstract

Summary
Clinicians and people with narcolepsy report varied access to higher‐cost narcolepsy treatments in England associated with variations in national and local commissioning. There are no publicly available data quantifying use of these drugs to support policy decisions. We therefore aimed to describe national, regional and local prescribing trends for higher‐cost narcolepsy drugs using new national databases. We used the English prescribing dataset and secondary care medicines data to quantify volumes of high‐cost narcolepsy drugs issued between 01 January 2019 and 31 December 2022. Volumes were converted to World Health Organisation defined daily doses, to estimate the monthly number of defined daily doses of sodium oxybate, pitolisant and solriamfetol issued by each integrated care board and region. We compared national, integrated care board, and regional level issuance of each drug over time. Analysis of almost 6000 primary care prescriptions and 2000 cumulative months of secondary care pharmacy stock data, issued across 41/42 integrated care boards in England, revealed a 49.1% increase in issuance of high‐cost narcolepsy drugs between 2019 and 2022. In 2022, sodium oxybate accounted for 52.66% of issuance, pitolisant 43.09% and solriamfetol 4.25%, with 22.31% of defined daily doses issued in primary care. Three integrated care boards (NHS Southeast London, NHS Cumbria and North‐East, NHS Cheshire and Merseyside) predominate, issuing 56.33% of all defined daily doses. Variations between integrated care boards and regions differ substantially by drug and route of issuance. Our findings describe substantial variation in the use of specialist narcolepsy drugs in England, and highlight the untapped potential of using large, public domain datasets to publicly review higher‐cost drug prescribing.

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Metrics

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Citations

29

References

Details

Published: Dec 08, 2024
Vol/Issue: 34(4)
License: View

Authors

F

Frederick van Someren

National Hospital for Neurology and Neurosurgery London UK

M

Milan Wiedemann

The Bennett Institute for Applied Data Science, Nuffield Department of Primary Care Health Sciences University of Oxford Oxford UK

C

Charlotte Warren‐Gash

Faculty of Epidemiology and Population Health London School of Hygiene and Tropical Medicine London UK

M

Martina Sykorova

Faculty of Epidemiology and Population Health London School of Hygiene and Tropical Medicine London UK

H

Hema Mistry

Warwick Medical School University of Warwick Warwick UK

M

Michelle A. Miller

Warwick Medical School University of Warwick Warwick UK

G

Guy Leschziner

Department of Neurology and Sleep Disorders Centre Guy's and St Thomas' NHS Foundation Trust London UK

E

Ellen Nolte

Faculty of Public Health and Policy London School of Hygiene and Tropical Medicine London UK

A

Aurélien Belot

Faculty of Public Health and Policy London School of Hygiene and Tropical Medicine London UK

I

IAN E. SMITH

Respiratory Support and Sleep Centre Royal Papworth Hospital Cambridge UK

T

Tim Quinnell

Respiratory Support and Sleep Centre Royal Papworth Hospital Cambridge UK

S

Sofia H. Eriksson

National Hospital for Neurology and Neurosurgery London UK; Department of Clinical and Experimental Epilepsy, UCL Institute of Neurology University College London London UK

H

Helen Strongman

Faculty of Epidemiology and Population Health London School of Hygiene and Tropical Medicine London UK; Narcolepsy UK Cambridgeshire UK

Funding

Cancer Research UK Award: EPNCZS34

Cite This Article

Frederick van Someren, Milan Wiedemann, Charlotte Warren‐Gash, et al. (2024). Trends and variation in issuance of high‐cost narcolepsy drugs by NHS England organisations and regions from 2019 to 2022. Journal of Sleep Research, 34(4). https://doi.org/10.1111/jsr.14415

Trends and variation in issuance of high‐cost narcolepsy drugs by NHS England organisations and regions from 2019 to 2022

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