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Abstract：
BACKGROUND: 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.
METHODS: 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.
RESULTS: 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.
CONCLUSIONS: 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.
METHODS: 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.
RESULTS: 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.
CONCLUSIONS: 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.
摘要：
背景：在瑞典，大约2000名儿童患有幼年特发性关节炎（JIA）。其中约一半继续患有活动性疾病，需要转移到成人风湿病护理。这项研究旨在调查瑞典青少年和父母对从儿科到成人风湿病治疗过渡准备的看法。
方法：本研究为横断面定量研究。瑞典一所大学医院儿科风湿病诊所的患者以及14-18岁的瑞典国家青年风湿病组织的成员及其父母应邀参加了这项研究。数据是通过过渡准备问卷(RTQ)收集的，重点是青少年的过渡准备情况，青少年的医疗行为和责任，父母的参与。对数据进行描述性统计分析。使用显著性水平为0.05的非参数检验以及因子分析和逻辑回归进行比较分析。
结果：有106名青少年（85名女孩，20个男孩）和96个父母回答RTQ。分析显示，许多青少年和父母经历了青少年对几种医疗保健行为的责任准备不足，例如预约专科护理预约，打电话续开处方，并通过电话与医务人员沟通，并转移到成人护理。父母和青少年都表示，青少年特别难以对医疗保健行为负责，这意味着青少年必须与儿科风湿病诊所的医疗保健专业人员（HCP）直接互动。例如续签处方。很明显，认为自己准备好对与HCPs直接互动相关的方面负责的青少年总体上更愿意转移到成人护理。
结论：青少年需要更多的支持才能感到准备转移到成人护理。根据这项研究的结果，我们可以发展，自定义,并优化瑞典青少年的过渡性护理计划。
方法：本研究为横断面定量研究。瑞典一所大学医院儿科风湿病诊所的患者以及14-18岁的瑞典国家青年风湿病组织的成员及其父母应邀参加了这项研究。数据是通过过渡准备问卷(RTQ)收集的，重点是青少年的过渡准备情况，青少年的医疗行为和责任，父母的参与。对数据进行描述性统计分析。使用显著性水平为0.05的非参数检验以及因子分析和逻辑回归进行比较分析。
结果：有106名青少年（85名女孩，20个男孩）和96个父母回答RTQ。分析显示，许多青少年和父母经历了青少年对几种医疗保健行为的责任准备不足，例如预约专科护理预约，打电话续开处方，并通过电话与医务人员沟通，并转移到成人护理。父母和青少年都表示，青少年特别难以对医疗保健行为负责，这意味着青少年必须与儿科风湿病诊所的医疗保健专业人员（HCP）直接互动。例如续签处方。很明显，认为自己准备好对与HCPs直接互动相关的方面负责的青少年总体上更愿意转移到成人护理。
结论：青少年需要更多的支持才能感到准备转移到成人护理。根据这项研究的结果，我们可以发展，自定义,并优化瑞典青少年的过渡性护理计划。
