Department of Women's and Children's Health, Karolinska Institutet, Karolinska Vägen 37A, 7 Floor, 171 76, Stockholm, Sweden.
Astrid Lindgren Children's Hospital, Karolinska University Hospital, Stockholm, Sweden.
BMC Health Serv Res. 2024 Jul 10;24(1):795. doi: 10.1186/s12913-024-11265-9.
In Sweden, approximately 2000 children live with Juvenile Idiopathic Arthritis (JIA). About half of them continue to have an active disease and need to transfer to adult rheumatology care. This study aimed to investigate Swedish adolescents' and parents´ perceptions of readiness for transition from pediatric to adult rheumatology care.
The study was a cross-sectional quantitative study. Patients at the pediatric rheumatology clinic at a university hospital in Sweden and members of The Swedish National Organization for Young Rheumatics aged 14-18 and their parents were invited to participate in the study. Data was collected with the Readiness for Transition Questionnaire (RTQ) focusing on adolescents' transition readiness, adolescents' healthcare behaviors and responsibility, and parental involvement. Data were analyzed with descriptive statistics. Comparative analyses were made using non-parametric tests with significance levels of 0.05 as well as factor analyses and logistic regression.
There were 106 adolescents (85 girls, 20 boys) and 96 parents answering the RTQ. The analysis revealed that many adolescents and parents experienced that the adolescents were ill-prepared to take over responsibility for several healthcare behaviors, such as booking specialty care appointments, calling to renew prescriptions and communicating with medical staff on phone and to transfer to adult care. Parents and adolescents alike stated that it was especially difficult for the adolescents to take responsibility for healthcare behaviors meaning that the adolescents had to have direct interaction with the healthcare professionals (HCPs) at the paediatric rheumatology clinic, for example to renew prescriptions. It was evident that the adolescents who perceived they were ready to take responsibility for the aspects related to direct interaction with HCPs were more overall ready to be transferred to adult care.
Adolescents need more support to feel prepared to transfer to adult care. With the results from this study, we can develop, customize, and optimize transitional care programs in Sweden for adolescents.
在瑞典，约有 2000 名儿童患有幼年特发性关节炎（JIA）。其中约有一半儿童的疾病仍处于活跃期，需要转至成人风湿病科进行治疗。本研究旨在调查瑞典青少年及其家长对从儿科向成人风湿病科过渡的准备情况。
本研究为横断面定量研究。瑞典一所大学医院的儿科风湿病诊所的患者以及瑞典全国青年风湿病患者组织的 14-18 岁成员及其家长受邀参加本研究。采用过渡准备情况问卷（RTQ）收集数据，重点关注青少年的过渡准备情况、青少年的医疗保健行为和责任以及家长的参与情况。采用描述性统计分析数据。采用非参数检验进行比较分析，显著性水平为 0.05，同时还进行了因子分析和逻辑回归分析。
共有 106 名青少年（85 名女孩，20 名男孩）和 96 名家长回答了 RTQ。分析结果显示，许多青少年和家长认为，青少年在接管预约专科就诊、打电话续方以及与医护人员通电话沟通等多项医疗保健行为的责任方面准备不足，向成人护理过渡。家长和青少年均表示，青少年特别难以承担医疗保健行为的责任，即青少年必须与儿科风湿病诊所的医护人员直接互动，例如续方。显然，那些认为自己已经准备好承担与医护人员直接互动相关方面责任的青少年，更有整体准备好转至成人护理。
青少年需要更多的支持，才能做好转至成人护理的准备。本研究结果可以帮助我们在瑞典为青少年开发、定制和优化过渡性护理方案。
