{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,7,14]],"date-time":"2026-07-14T06:32:48Z","timestamp":1784010768620,"version":"3.55.0"},"reference-count":49,"publisher":"National Institute for Health and Care Research","license":[{"start":{"date-parts":[[2022,4,8]],"date-time":"2022-04-08T00:00:00Z","timestamp":1649376000000},"content-version":"tdm","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"DOI":"10.13039\/501100000272","name":"National Institute for Health Research","doi-asserted-by":"publisher","award":["DRF-2018-11-ST2-013"],"award-info":[{"award-number":["DRF-2018-11-ST2-013"]}],"id":[{"id":"10.13039\/501100000272","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/501100000272","name":"National Institute for Health Research","doi-asserted-by":"publisher","award":["CDF-2018-11-ST2-002"],"award-info":[{"award-number":["CDF-2018-11-ST2-002"]}],"id":[{"id":"10.13039\/501100000272","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["openresearch.nihr.ac.uk"],"crossmark-restriction":false},"short-container-title":["NIHR Open Res"],"abstract":"<ns4:p>\n                    <ns4:bold>Background:<\/ns4:bold>\n                    The number of children with life-limiting conditions in England is known to be increasing, which has been attributed in part to increased survival times. Consequently, more of these young people will reach ages at which they start transitioning to adult healthcare (14-19 years). However, no research exists that quantifies the number of young people with life-limiting conditions in England reaching transition ages or their medical complexity, both essential data for good service planning.\n                  <\/ns4:p>\n                  <ns4:p>\n                    <ns4:bold>Methods:<\/ns4:bold>\n                    National hospital data in England (Hospital Episode Statistics) from NHS Digital were used to identify the number of young people aged 14-19 years from 2012\/13 to 2018\/19 with life-limiting conditions diagnosed in childhood. The data were assessed for indicators of medical complexity: number of conditions, number of main specialties of consultants involved, number of hospital admissions and Accident &amp; Emergency Department visits, length of stay, bed days and technology dependence (gastrostomies, tracheostomies). Overlap between measures of complexity was assessed.\n                  <\/ns4:p>\n                  <ns4:p>\n                    <ns4:bold>Results:<\/ns4:bold>\n                    The number of young people with life-limiting conditions has increased rapidly over the study period, from 20363 in 2012\/13 to 34307 in 2018\/19. There was evidence for increased complexity regarding the number of conditions and number of distinct main specialties of consultants involved in care, but limited evidence of increases in average healthcare use per person or increased technology dependence. The increasing size of the group meant that healthcare use increased overall. There was limited overlap between measures of medical complexity.\n                  <\/ns4:p>\n                  <ns4:p>\n                    <ns4:bold>Conclusions:<\/ns4:bold>\n                    The number of young people with life-limiting conditions reaching ages at which transition to adult healthcare should take place is increasing rapidly. Healthcare providers will need to allocate resources to deal with increasing healthcare demands and greater complexity. The transition to adult healthcare must be managed well to limit impacts on healthcare resource use and improve experiences for young people and their families.\n                  <\/ns4:p>","DOI":"10.3310\/nihropenres.13265.1","type":"journal-article","created":{"date-parts":[[2022,4,8]],"date-time":"2022-04-08T11:40:17Z","timestamp":1649418017000},"page":"27","update-policy":"https:\/\/doi.org\/10.3310\/nihropenres.crossmark-policy","source":"Crossref","is-referenced-by-count":22,"title":["Numbers, characteristics, and medical complexity of children with life-limiting conditions reaching age of transition to adult care in England: a repeated cross-sectional study"],"prefix":"10.3310","volume":"2","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-8447-0306","authenticated-orcid":false,"given":"Stuart","family":"Jarvis","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Gerry","family":"Richardson","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kate","family":"Flemming","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Lorna K","family":"Fraser","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"6221","published-online":{"date-parts":[[2022,4,8]]},"reference":[{"key":"ref-1","doi-asserted-by":"publisher","first-page":"1641-1651","DOI":"10.1177\/0269216320975308","article-title":"Estimating the current and future prevalence of life-limiting conditions in children in England.","volume":"35","author":"L Fraser","year":"2021","journal-title":"Palliat Med."},{"key":"ref-2","doi-asserted-by":"publisher","first-page":"e923-9","DOI":"10.1542\/peds.2011-2846","article-title":"Rising national prevalence of life-limiting conditions in children in England.","volume":"129","author":"L Fraser","year":"2012","journal-title":"Pediatrics."},{"key":"ref-3","article-title":"A guide to children\u2019s palliative care.","author":"L Chambers","year":"2018"},{"key":"ref-4","doi-asserted-by":"publisher","first-page":"131-138","DOI":"10.1136\/archdischild-2016-310800","article-title":"How many children and young people with life-limiting conditions are clinically unstable? 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Jarvis","year":"2021","journal-title":"Pediatr Res."}],"container-title":["NIHR Open Research"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/openresearch.nihr.ac.uk\/articles\/2-27\/v1\/xml","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/openresearch.nihr.ac.uk\/articles\/2-27\/v1\/pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/openresearch.nihr.ac.uk\/articles\/2-27\/v1\/iparadigms","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2023,8,15]],"date-time":"2023-08-15T11:51:02Z","timestamp":1692100262000},"score":1,"resource":{"primary":{"URL":"https:\/\/openresearch.nihr.ac.uk\/articles\/2-27\/v1"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2022,4,8]]},"references-count":49,"URL":"https:\/\/doi.org\/10.3310\/nihropenres.13265.1","relation":{"has-review":[{"id-type":"doi","id":"10.3310\/nihropenres.14384.r28696","asserted-by":"subject"},{"id-type":"doi","id":"10.3310\/nihropenres.14384.r28614","asserted-by":"subject"},{"id-type":"doi","id":"10.3310\/nihropenres.14384.r28614","asserted-by":"object"},{"id-type":"doi","id":"10.3310\/nihropenres.14384.r28696","asserted-by":"object"}]},"ISSN":["2633-4402"],"issn-type":[{"value":"2633-4402","type":"electronic"}],"subject":[],"published":{"date-parts":[[2022,4,8]]},"assertion":[{"value":"Indexed","URL":"https:\/\/openresearch.nihr.ac.uk\/articles\/2-27\/v1#article-reports","order":0,"name":"referee-status","label":"Referee status","group":{"name":"current-referee-status","label":"Current Referee Status"}},{"value":"10.3310\/nihropenres.14384.r28614, Intira Jeannie Collins, Medical Research Council Clinical Trials Unit, Institute of Clinical Trials and Methodology, University College London, London, UK, 24 May 2022, version 1, indexed","URL":"https:\/\/openresearch.nihr.ac.uk\/articles\/2-27\/v1#referee-response-28614","order":0,"name":"referee-response-28614","label":"Referee Report","group":{"name":"article-reports","label":"Article Reports"}},{"value":"<b>Stuart Jarvis<\/b>; \n<i>Posted: 26 May 2022<\/i>; We thank the reviewer for these kind and helpful comments.  As noted, predictors of medical resource use are beyond the scope of this paper, but certainly relevant ot future research. Previous cited publications go into a little more detail on the 'life-limiting conditions' included and how they were defined. We do however agree that it would be useful to see, for example, how the mix of most prevalent conditions has changed over time and perhaps the medical resource burden associated with these. We will look at including this information in a revised version once all peer review reports are in.","URL":"https:\/\/openresearch.nihr.ac.uk\/articles\/2-27\/v1#referee-comment-3204","order":1,"name":"referee-comment-3204","label":"Referee Comment","group":{"name":"article-reports","label":"Article Reports"}},{"value":"10.3310\/nihropenres.14384.r28696, Adelaide Withers, Department of Respiratory and Sleep Medicine, Perth Children\u2019s Hospital, Perth, WA, Australia, 18 Jul 2022, version 1, indexed","URL":"https:\/\/openresearch.nihr.ac.uk\/articles\/2-27\/v1#referee-response-28696","order":2,"name":"referee-response-28696","label":"Referee Report","group":{"name":"article-reports","label":"Article Reports"}},{"value":"This project is funded by the National Institute for Health Research (NIHR) under its Doctoral Research Fellowship grant (Grant Reference Number DRF-2018-11-ST2-013, awarded to Stuart Jarvis) and its Career Development Fellowship grant (Grant Reference Number CDF-2018-11-ST2-002, awarded to Lorna Fraser). The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care. The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.","order":3,"name":"grant-information","label":"Grant Information"},{"value":"This is an open access article distributed under the terms of the Creative Commons Attribution Licence, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.","order":0,"name":"copyright-info","label":"Copyright"}]}}