TY - JOUR
AU - F. van Someren
AU - M. Wiedemann
AU - C. Warren-Gash
AU - M. Sykorova
AU - H. Mistry
AU - M. A. Miller
AU - G. Leschziner
AU - E. Nolte
AU - A. Belot
AU - I. E. Smith
AU - T. Quinnell
AU - S. H. Eriksson
AU - H. Strongman
A1 - 
AB - 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.
AD - National Hospital for Neurology and Neurosurgery, London, UK.; The Bennett Institute for Applied Data Science, Nuffield Department of Primary Care Health Sciences, University of Oxford, Oxford, UK.; Faculty of Epidemiology and Population Health, London School of Hygiene and Tropical Medicine, London, UK.; Warwick Medical School, University of Warwick, Warwick, UK.; Department of Neurology and Sleep Disorders Centre, Guy's and St Thomas' NHS Foundation Trust, London, UK.; Faculty of Public Health and Policy, London School of Hygiene and Tropical Medicine, London, UK.; Respiratory Support and Sleep Centre, Royal Papworth Hospital, Cambridge, UK.; Department of Clinical and Experimental Epilepsy, UCL Institute of Neurology, University College London, London, UK.; Narcolepsy UK, Cambridgeshire, UK.
AN - 39647479
BT - J Sleep Res
C5 - Opioids & Substance Use
CP - 4
DA - Aug
DO - 10.1111/jsr.14415
DP - NLM
ET - 20241208
IS - 4
JF - J Sleep Res
LA - eng
N2 - 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.
PY - 2025
SN - 0962-1105 (Print); 0962-1105
SP - e14415
ST - Trends and variation in issuance of high-cost narcolepsy drugs by NHS England organisations and regions from 2019 to 2022
T1 - Trends and variation in issuance of high-cost narcolepsy drugs by NHS England organisations and regions from 2019 to 2022
T2 - J Sleep Res
TI - Trends and variation in issuance of high-cost narcolepsy drugs by NHS England organisations and regions from 2019 to 2022
U1 - Opioids & Substance Use
U3 - 10.1111/jsr.14415
VL - 34
VO - 0962-1105 (Print); 0962-1105
Y1 - 2025
ER -