van Someren Frederick, Wiedemann Milan, Warren-Gash Charlotte, Sykorova Martina, Mistry Hema, Miller Michelle A, Leschziner Guy, Nolte Ellen, Belot Aurélien, Smith Ian E, Quinnell Tim, Eriksson Sofia H, Strongman Helen
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.
J Sleep Res. 2025 Aug;34(4):e14415. doi: 10.1111/jsr.14415. Epub 2024 Dec 8.
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.
临床医生和发作性睡病患者报告称，在英格兰，获得成本较高的发作性睡病治疗药物的机会各不相同，这与国家和地方委托安排的差异有关。目前没有公开数据来量化这些药物的使用情况以支持政策决策。因此，我们旨在利用新的国家数据库描述成本较高的发作性睡病药物在全国、地区和地方的处方趋势。我们使用了英格兰处方数据集和二级医疗药品数据，以量化2019年1月1日至2022年12月31日期间发放的高成本发作性睡病药物的数量。数量被转换为世界卫生组织定义的每日剂量，以估计每个综合护理委员会和地区每月发放的羟丁酸钠、匹莫林和索利那新的定义每日剂量数量。我们比较了随着时间推移每种药物在全国、综合护理委员会和地区层面的发放情况。对英格兰41/42个综合护理委员会发放的近6000份初级医疗处方和2000个累积月的二级医疗药房库存数据进行分析后发现，2019年至2022年期间，高成本发作性睡病药物的发放量增加了49.1%。2022年，羟丁酸钠占发放量的52.66%，匹莫林占43.09%，索利那新占4.25%，其中22.31%的定义每日剂量在初级医疗中发放。三个综合护理委员会（伦敦东南部国民保健服务局、坎布里亚和东北部国民保健服务局、柴郡和默西塞德郡国民保健服务局）占主导地位，发放了所有定义每日剂量的56.33%。综合护理委员会和地区之间的差异因药物和发放途径而有很大不同。我们的研究结果描述了英格兰专科发作性睡病药物使用情况的巨大差异，并强调了利用大型公共领域数据集公开审查高成本药物处方的未开发潜力。
