Jarvi Stuart, Richardson Gerry, Flemming Kate, Fraser Lorna K
Martin House Research Centre, University of York, York, YO10 5DD, UK.
Centre for Health Economics, University of York, York, YO10 5DD, UK.
NIHR Open Res. 2022 Apr 8;2:27. doi: 10.3310/nihropenres.13265.1.
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.
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 & Emergency Department visits, length of stay, bed days and technology dependence (gastrostomies, tracheostomies). Overlap between measures of complexity was assessed.
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.
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.
已知英国患有危及生命疾病的儿童数量在增加，部分原因是生存期延长。因此，更多这类年轻人将达到开始向成人医疗保健过渡的年龄（14至19岁）。然而，尚无研究对英国达到过渡年龄的患有危及生命疾病的年轻人数量或其医疗复杂性进行量化，而这两项数据对于良好的服务规划至关重要。
利用英国国家医疗服务体系数字部门提供的英格兰国家医院数据（医院 Episode 统计数据），确定2012/13至2018/19年期间14至19岁、童年时被诊断患有危及生命疾病的年轻人数量。对数据进行医疗复杂性指标评估：疾病数量、参与诊治的顾问主要专科数量、住院次数和急诊就诊次数、住院时长、卧床天数以及技术依赖情况（胃造口术、气管切开术）。评估了复杂性衡量指标之间的重叠情况。
在研究期间，患有危及生命疾病的年轻人数量迅速增加，从2012/13年的20363人增至2018/19年的34307人。有证据表明，在疾病数量和参与护理的顾问不同主要专科数量方面，复杂性有所增加，但关于人均医疗保健使用增加或技术依赖增加的证据有限。该群体规模的扩大意味着总体医疗保健使用增加。医疗复杂性衡量指标之间的重叠有限。
达到应向成人医疗保健过渡年龄的患有危及生命疾病的年轻人数量正在迅速增加。医疗服务提供者将需要分配资源，以应对不断增加的医疗需求和更高的复杂性。必须妥善管理向成人医疗保健的过渡，以限制对医疗资源使用的影响，并改善年轻人及其家庭的体验。
