Department of Primary Care & Public Health, Imperial College London, London, UK; Nuffield Trust, London, UK.
Department of Primary Care & Public Health, Imperial College London, London, UK; Nuffield Trust, London, UK.
Lancet Child Adolesc Health. 2019 Sep;3(9):627-635. doi: 10.1016/S2352-4642(19)30201-9. Epub 2019 Jul 4.
Concerns have been raised about variation in care quality and outcomes among children and young people with epilepsies in England. We aimed to investigate the association between quality of paediatric care, hospital admissions, and all-cause deaths among epilepsy patients.
In this longitudinal data linkage study of paediatric epilepsy services in England, we linked unit-level data from round 1 (2009-11) and round 2 (2013-14) of the Epilepsy12 national clinical audit, with death registrations from the UK Office for National Statistics and data for unplanned hospital admissions from Hospital Episode Statistics. We investigated the association between unit-level performance in involving a paediatrician with epilepsy expertise, an epilepsy specialist nurse, and a paediatric neurologist (where appropriate) in round 1 and the proportion of adolescents (aged 10-18 years) with epilepsy admitted to each unit who subsequently died during the study period (April 1, 2009, to March 31, 2015). We also investigated whether change in Epilepsy12 performance between the two audit rounds was associated with changes in the standardised ratio of observed-to-expected unplanned epilepsy admissions over the same period.
In 99 units with data for the analyses relating to paediatricians with epilepsy expertise and epilepsy specialist nurses, 134 (7%) of 1795 patients died during the study period, 88 (5%) of whom died after the transition to adult service. In 55 units with data for the analyses relating to paediatric neurologists, 79 (7%) of 1164 patients died, 54 (5%) of whom did so after the transition. In regression models adjusting for population, unit, and hospital activity characteristics, absolute reductions in total mortality risk (6·4 percentage points, 95% CI 0·1-12·7) and mortality risk after transition (5·7 percentage points, 0·6-10·8) were found when comparing units where all versus no eligible patients were seen by a paediatric neurologist. Units where all eligible patients were seen by a paediatric neurologist were estimated to have absolute reductions of 4·6 percentage points (0·3-8·9) in total mortality and of 4·6 percentage points (1·2-8·0) in post-transition mortality, compared with units where no or some eligible patients were seen by a paediatric neurologist. There was no significant association between performance on being seen by an epilepsy specialist nurse or by a paediatrician with epilepsy expertise and mortality. In units where access to an epilepsy specialist nurse decreased, the standardised ratio of epilepsy admissions increased by a mean of 0·21 (0·01-0·42).
Among adolescents with epilepsy, greater involvement of tertiary specialists in paediatric care is associated with decreased all-cause mortality in the period after transition to adult services. Reduced access to an epilepsy specialist nurse was associated with an increase in paediatric epilepsy admissions.
The Health Foundation.
人们对英格兰儿童和青少年癫痫患者护理质量和结果的差异表示担忧。我们旨在研究儿科护理质量、住院和癫痫患者全因死亡之间的关联。
在这项针对英格兰儿科癫痫服务的纵向数据链接研究中，我们将第一轮（2009-11 年）和第二轮（2013-14 年）的癫痫 12 项国家临床审计的单位级数据与英国国家统计局的死亡登记以及医院入院统计的非计划性住院数据进行了链接。我们调查了第一轮中单位级参与有癫痫专业知识的儿科医生、癫痫专科护士和儿科神经科医生（如适用）的表现与随后在研究期间（2009 年 4 月 1 日至 2015 年 3 月 31 日）每个单位接受治疗的青少年（10-18 岁）癫痫患者的死亡比例之间的关联。我们还调查了两轮审计之间癫痫 12 项绩效的变化是否与同期观察到的与预期相比的非计划性癫痫入院的标准化比率的变化有关。
在与有癫痫专业知识的儿科医生和癫痫专科护士相关的分析中，有 99 个单位的数据可用于分析，在 1795 名患者中，有 134 名（7%）在研究期间死亡，其中 88 名（5%）在过渡到成人服务后死亡。在与儿科神经科医生相关的分析中，有 55 个单位的数据可用于分析，在 1164 名患者中，有 79 名（7%）死亡，其中 54 名（5%）在过渡后死亡。在调整人口、单位和医院活动特征的回归模型中，当比较所有合格患者均由儿科神经科医生诊治的单位与无或部分合格患者由儿科神经科医生诊治的单位时，总死亡率风险（6.4 个百分点，95%CI 0.1-12.7）和过渡后死亡率风险（5.7 个百分点，0.6-10.8）均有显著降低。与没有或只有部分合格患者由儿科神经科医生诊治的单位相比，所有合格患者均由儿科神经科医生诊治的单位，其总死亡率和过渡后死亡率的绝对降低分别为 4.6 个百分点（0.3-8.9）和 4.6 个百分点（1.2-8.0）。在接受癫痫专科护士或有癫痫专业知识的儿科医生诊治方面的表现与死亡率之间没有显著关联。在获得癫痫专科护士服务减少的单位中，癫痫入院的标准化比率平均增加了 0.21（0.01-0.42）。
在患有癫痫的青少年中，更多地参与儿科护理的三级专科医生与过渡到成人服务后的全因死亡率降低有关。获得癫痫专科护士服务的减少与儿科癫痫入院人数的增加有关。
健康基金会。
