PDF(Pubmed)
Abstract：
This study aimed to measure (1) the proportion of children who continue to receive specialist care (rheumatology/ophthalmology) as adults, (2) the characteristics associated with continuing specialist care, and (3) the frequency of specialist care appointments in both paediatric and adult services.
A retrospective cohort of young people with JIA was identified from UK primary care electronic health records (Clinical Practice Research Datalink) between 1 April 2003 and 31 December 2018. To be included in the study, cases needed to have at least 1 year of registration at their general practice beyond age 18 and linkage to Hospital Episodes Statistics data for secondary care information. All specialist care outpatient visits were identified from Hospital Episodes Statistics outpatient data.
There were 666 young people included in the study. Of these, 427 (64%) received specialist care beyond age 18, 90 (13%) had their last recorded contact at 16-17 years and 149 (22%) did not continue after 16 years. Older age at diagnosis, female gender, less deprivation and a childhood diagnosis of uveitis were associated with continuing specialist care beyond age 18. Of those continuing beyond 18, 35% (n = 153) were subsequently discharged by the study end date. Of all those discharged, 32% had a missed appointment recorded after the last attended visit, suggesting failure to attend.
Two-thirds of young people with JIA continue to receive specialist care beyond age 18. This is useful information for children and young people with JIA and their families planning for their future, and for clinicians planning health-care services.
A retrospective cohort of young people with JIA was identified from UK primary care electronic health records (Clinical Practice Research Datalink) between 1 April 2003 and 31 December 2018. To be included in the study, cases needed to have at least 1 year of registration at their general practice beyond age 18 and linkage to Hospital Episodes Statistics data for secondary care information. All specialist care outpatient visits were identified from Hospital Episodes Statistics outpatient data.
There were 666 young people included in the study. Of these, 427 (64%) received specialist care beyond age 18, 90 (13%) had their last recorded contact at 16-17 years and 149 (22%) did not continue after 16 years. Older age at diagnosis, female gender, less deprivation and a childhood diagnosis of uveitis were associated with continuing specialist care beyond age 18. Of those continuing beyond 18, 35% (n = 153) were subsequently discharged by the study end date. Of all those discharged, 32% had a missed appointment recorded after the last attended visit, suggesting failure to attend.
Two-thirds of young people with JIA continue to receive specialist care beyond age 18. This is useful information for children and young people with JIA and their families planning for their future, and for clinicians planning health-care services.
摘要：
目的：本研究旨在测量1）继续接受专科护理（风湿病/眼科）的儿童与成人的比例，2)与持续专科护理相关的特征，以及3)儿科和成人服务中专家护理预约的频率。
方法：在2003年4月1日至2018年12月31日之间，从英国初级保健电子健康记录（临床实践研究数据链（CPRD））中确定了JIA年轻人的回顾性队列。要纳入研究病例，需要在18岁以上的全科医生处进行至少一年的注册，并与医院发作统计（HES）数据挂钩，以获取二级保健信息。从HES门诊数据中确定所有专科护理门诊就诊。
结果：该研究纳入了666名年轻人。其中,427（64％）在18岁以上接受专科护理，90（13％）在16-17岁之间有最后记录的接触，而149（22％）在16年后没有继续。诊断时年龄较大，女性性别,更大的剥夺和儿童期葡萄膜炎的诊断与18岁以后继续接受专科护理有关.在持续超过18岁的患者中，有35％（n=153）随后在研究结束日期之前出院。在所有出院的人中，32％的人在上次参加访问后错过了约会，暗示未能参加。
结论：三分之二的JIA年轻人在18岁以后继续接受专科护理。这对于JIA及其家庭计划未来的儿童和年轻人来说是有用的信息，以及计划医疗服务的临床医生。
方法：在2003年4月1日至2018年12月31日之间，从英国初级保健电子健康记录（临床实践研究数据链（CPRD））中确定了JIA年轻人的回顾性队列。要纳入研究病例，需要在18岁以上的全科医生处进行至少一年的注册，并与医院发作统计（HES）数据挂钩，以获取二级保健信息。从HES门诊数据中确定所有专科护理门诊就诊。
结果：该研究纳入了666名年轻人。其中,427（64％）在18岁以上接受专科护理，90（13％）在16-17岁之间有最后记录的接触，而149（22％）在16年后没有继续。诊断时年龄较大，女性性别,更大的剥夺和儿童期葡萄膜炎的诊断与18岁以后继续接受专科护理有关.在持续超过18岁的患者中，有35％（n=153）随后在研究结束日期之前出院。在所有出院的人中，32％的人在上次参加访问后错过了约会，暗示未能参加。
结论：三分之二的JIA年轻人在18岁以后继续接受专科护理。这对于JIA及其家庭计划未来的儿童和年轻人来说是有用的信息，以及计划医疗服务的临床医生。
