{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,4,2]],"date-time":"2026-04-02T23:22:51Z","timestamp":1775172171013,"version":"3.50.1"},"reference-count":29,"publisher":"Wiley","issue":"4","license":[{"start":{"date-parts":[[2024,12,8]],"date-time":"2024-12-08T00:00:00Z","timestamp":1733616000000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"DOI":"10.13039\/501100012317","name":"UCLH Biomedical Research Centre","doi-asserted-by":"publisher","id":[{"id":"10.13039\/501100012317","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/501100000272","name":"National Institute for Health and Care Research","doi-asserted-by":"publisher","award":["NIHR301730"],"award-info":[{"award-number":["NIHR301730"]}],"id":[{"id":"10.13039\/501100000272","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/501100000289","name":"Cancer Research UK","doi-asserted-by":"publisher","award":["EPNCZS34"],"award-info":[{"award-number":["EPNCZS34"]}],"id":[{"id":"10.13039\/501100000289","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Journal of Sleep Research"],"published-print":{"date-parts":[[2025,8]]},"abstract":"<jats:title>Summary<\/jats:title>\n                  <jats:p>Clinicians and people with narcolepsy report varied access to higher\u2010cost 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\u2010cost narcolepsy drugs using new national databases. We used the English prescribing dataset and secondary care medicines data to quantify volumes of high\u2010cost 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\u2010cost 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\u2010East, 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\u2010cost drug prescribing.<\/jats:p>","DOI":"10.1111\/jsr.14415","type":"journal-article","created":{"date-parts":[[2024,12,8]],"date-time":"2024-12-08T18:29:41Z","timestamp":1733682581000},"update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":2,"title":["Trends and variation in issuance of high\u2010cost narcolepsy drugs by\n                    <scp>NHS<\/scp>\n                    England organisations and regions from 2019 to 2022"],"prefix":"10.1111","volume":"34","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-3885-5648","authenticated-orcid":false,"given":"Frederick","family":"van Someren","sequence":"first","affiliation":[{"name":"National Hospital for Neurology and Neurosurgery  London UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Milan","family":"Wiedemann","sequence":"additional","affiliation":[{"name":"The Bennett Institute for Applied Data Science, Nuffield Department of Primary Care Health Sciences University of Oxford  Oxford UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Charlotte","family":"Warren\u2010Gash","sequence":"additional","affiliation":[{"name":"Faculty of Epidemiology and Population Health London School of Hygiene and Tropical Medicine  London UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-2579-5888","authenticated-orcid":false,"given":"Martina","family":"Sykorova","sequence":"additional","affiliation":[{"name":"Faculty of Epidemiology and Population Health London School of Hygiene and Tropical Medicine  London UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Hema","family":"Mistry","sequence":"additional","affiliation":[{"name":"Warwick Medical School University of Warwick  Warwick UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Michelle A.","family":"Miller","sequence":"additional","affiliation":[{"name":"Warwick Medical School University of Warwick  Warwick UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Guy","family":"Leschziner","sequence":"additional","affiliation":[{"name":"Department of Neurology and Sleep Disorders Centre Guy's and St Thomas' NHS Foundation Trust  London UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Ellen","family":"Nolte","sequence":"additional","affiliation":[{"name":"Faculty of Public Health and Policy London School of Hygiene and Tropical Medicine  London UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Aur\u00e9lien","family":"Belot","sequence":"additional","affiliation":[{"name":"Faculty of Public Health and Policy London School of Hygiene and Tropical Medicine  London UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Ian E.","family":"Smith","sequence":"additional","affiliation":[{"name":"Respiratory Support and Sleep Centre Royal Papworth Hospital  Cambridge UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Tim","family":"Quinnell","sequence":"additional","affiliation":[{"name":"Respiratory Support and Sleep Centre Royal Papworth Hospital  Cambridge UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Sofia H.","family":"Eriksson","sequence":"additional","affiliation":[{"name":"National Hospital for Neurology and Neurosurgery  London UK"},{"name":"Department of Clinical and Experimental Epilepsy, UCL Institute of Neurology University College London  London UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-8739-4601","authenticated-orcid":false,"given":"Helen","family":"Strongman","sequence":"additional","affiliation":[{"name":"Faculty of Epidemiology and Population Health London School of Hygiene and Tropical Medicine  London UK"},{"name":"Narcolepsy UK  Cambridgeshire UK"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"311","published-online":{"date-parts":[[2024,12,8]]},"reference":[{"key":"e_1_2_10_2_1","doi-asserted-by":"publisher","DOI":"10.1111\/ene.14888"},{"key":"e_1_2_10_3_1","unstructured":"British National Formulary. (2024a).British National Formulary.https:\/\/bnf.nice.org.uk\/"},{"key":"e_1_2_10_4_1","unstructured":"British National Formulary. (2024b).Solriamfetol\u2010Indications and Dose.https:\/\/bnf.nice.org.uk\/drugs\/solriamfetol\/#indications-and-dose"},{"key":"e_1_2_10_5_1","unstructured":"Cambridge and Peterborough Integrated Care System. (2022).Protocol for the Management of Patients Sodium Oxybate for Narcolepsy.https:\/\/tinyurl.com\/2phm9trw"},{"key":"e_1_2_10_6_1","doi-asserted-by":"publisher","DOI":"10.1136\/bmj.m2607"},{"key":"e_1_2_10_7_1","doi-asserted-by":"publisher","DOI":"10.1136\/bmjopen-2016"},{"key":"e_1_2_10_8_1","unstructured":"Leicester Leicestershire and Rutland Area Prescribing Committee. (2015).Leicester Leicestershire and Rutland area prescribing committee\u2010sodium Oxybate.https:\/\/www.areaprescribingcommitteeleicesterleicestershirerutland.nhs.uk\/traffic\u2010lights\/view\/509\/"},{"key":"e_1_2_10_9_1","doi-asserted-by":"publisher","DOI":"10.12688\/wellcomeopenres.17360.1"},{"key":"e_1_2_10_10_1","unstructured":"Narcolepsy UK. (2019).Narcolepsy Charter.https:\/\/www.narcolepsy.org.uk\/narcolepsy-charter\/"},{"key":"e_1_2_10_11_1","unstructured":"NICE. (2024). Guidance awaiting development:Pitolisant for treating narcolepsy in children and young people 6 to 17\u2009years.https:\/\/www.nice.org.uk\/guidance\/awaiting-development\/gid-ta11394"},{"key":"e_1_2_10_12_1","unstructured":"NHS Business Service Authority. (2021).Secondary Care Medicines Data Release Guidance.https:\/\/tinyurl.com\/33exa2kw"},{"key":"e_1_2_10_13_1","unstructured":"NICE. (2017). Evidence Summary [ES8]Narcolepsy with or without cataplexy in adults: Pitolisant.www.nice.org.uk\/guidance\/es8"},{"key":"e_1_2_10_14_1","unstructured":"NICE. (2021).Single technology appraisal Solriamfetol for treating excessive daytime sleepiness caused by Narcolepsy [ID1602] Committee Papers.https:\/\/www.nice.org.uk\/guidance\/ta758\/documents\/committee-papers"},{"key":"e_1_2_10_15_1","unstructured":"NICE. (2022). TA758FAD\u2010Solriamfetol for treating excessive daytime sleepiness caused by narcolepsy.https:\/\/www.nice.org.uk\/guidance\/ta758\/resources\/solriamfetol\u2010for\u2010treating\u2010excessive\u2010daytime\u2010sleepiness\u2010caused\u2010by\u2010narcolepsy\u2010pdf\u201082611382155973"},{"key":"e_1_2_10_16_1","unstructured":"Office for National Statistics\u2010Open Geography Portal. 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(2019).Regional Medicines Optimisation Committee (RMOC) Advisory Statement Sodium Oxybate Commissioning in Adult Patients with Narcolepsy with Cataplexy Clinical Decision Criteria.https:\/\/tinyurl.com\/mpj79cpj"},{"key":"e_1_2_10_25_1","doi-asserted-by":"publisher","DOI":"10.1136\/thoraxjnl-2013-203887"},{"key":"e_1_2_10_26_1","doi-asserted-by":"publisher","DOI":"10.1136\/bmjresp-2023-bssconf.59"},{"key":"e_1_2_10_27_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.sleep.2014.10.002"},{"key":"e_1_2_10_28_1","doi-asserted-by":"publisher","DOI":"10.1002\/ana.25423"},{"key":"e_1_2_10_29_1","doi-asserted-by":"publisher","DOI":"10.1136\/annrheumdis-2020-219517"},{"key":"e_1_2_10_30_1","doi-asserted-by":"publisher","DOI":"10.1136\/bmj.i2367"}],"container-title":["Journal of Sleep Research"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1111\/jsr.14415","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,12,5]],"date-time":"2025-12-05T02:53:13Z","timestamp":1764903193000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1111\/jsr.14415"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2024,12,8]]},"references-count":29,"journal-issue":{"issue":"4","published-print":{"date-parts":[[2025,8]]}},"alternative-id":["10.1111\/jsr.14415"],"URL":"https:\/\/doi.org\/10.1111\/jsr.14415","archive":["Portico"],"relation":{},"ISSN":["0962-1105","1365-2869"],"issn-type":[{"value":"0962-1105","type":"print"},{"value":"1365-2869","type":"electronic"}],"subject":[],"published":{"date-parts":[[2024,12,8]]},"assertion":[{"value":"2024-06-12","order":0,"name":"received","label":"Received","group":{"name":"publication_history","label":"Publication History"}},{"value":"2024-11-07","order":2,"name":"accepted","label":"Accepted","group":{"name":"publication_history","label":"Publication History"}},{"value":"2024-12-08","order":3,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}],"article-number":"e14415"}}