New Children's Hospital, Pediatric Research Center, University of Helsinki, Helsinki, Finland.
Department of Pediatrics, Aarhus University Hospital, Aarhus, Denmark.
Scand J Rheumatol. 2022 Nov;51(6):490-494. doi: 10.1080/03009742.2022.2040117. Epub 2022 Mar 11.
The symptoms of juvenile idiopathic arthritis (JIA) and the necessity for continuous treatment may persist in adulthood. Therefore, patients with JIA need to be appropriately transferred to adult care. We aimed to analyse the timing of the patients' transition to adult care, and patients' self-management skills with the process and the quality of the transition.
This study included 161 Finnish participants of the population-based Nordic JIA cohort who attended a 17 year follow-up appointment. Special attention was paid to the three groups: those referred by the paediatric rheumatology outpatient clinic to primary healthcare (PHC), those who were directly transferred to adult rheumatology care, and those who were later referred.
A total of 136 patients (84%) were eligible to participate in the study, and 40% of them were directly transferred to an adult rheumatology clinic. Of the patients, 72% eventually ended up being referred to an adult rheumatology outpatient clinic. However, 16% of the patients in the PHC group had active disease during the study appointment and were referred to adult services after the study visit.
This study reveals the need to improve the transition process from paediatric care to adult care and to find the variables that can indicate the need for immediate transition. Although challenging, it is important to avoid treatment delay in adult patients with JIA who may have active disease but who do not have appropriate access to an adult rheumatological outpatient clinic.
幼年特发性关节炎(JIA)的症状和持续治疗的必要性可能会持续到成年期。因此,JIA 患者需要适当转入成人护理。我们旨在分析患者转入成人护理的时间,以及患者在该过程中的自我管理技能和过渡的质量。
本研究纳入了来自基于人群的北欧 JIA 队列的 161 名芬兰参与者,他们参加了 17 年的随访预约。特别关注了三组患者:由儿科风湿病门诊转至初级保健(PHC)的患者、直接转至成人风湿病护理的患者,以及随后转至成人风湿病护理的患者。
共有 136 名患者(84%)符合参与研究的条件,其中 40%的患者直接转至成人风湿病诊所。在这些患者中,最终有 72%的患者被转诊至成人风湿病门诊。然而,PHC 组中有 16%的患者在研究预约期间存在活动性疾病,在研究访问后被转诊至成人服务。
本研究揭示了需要改进从儿科护理到成人护理的过渡过程,并找到可以指示立即过渡需求的变量。虽然具有挑战性,但避免 JIA 成年患者的治疗延迟很重要,这些患者可能患有活动性疾病,但无法获得适当的成人风湿病门诊服务。