Walter Margot, Kamphuis Sylvia, van Pelt Philomine, de Vroed Annemarie, Hazes Johanna M W
Department of Rheumatology, Erasmus University Medical Centre, Postal box 2040, 3000, CA, Rotterdam, the Netherlands.
Department of Pediatric Rheumatology, Sophia Children's Hospital - Erasmus University Medical Centre, Rotterdam, the Netherlands.
Pediatr Rheumatol Online J. 2018 Aug 3;16(1):50. doi: 10.1186/s12969-018-0268-3.
In 2008 a clinical transition pathway for young people with juvenile-onset rheumatic and musculoskeletal diseases (jRMD) aiming at improving transitional care was instituted. Historical data on drop-out rate in our clinic was 35%, one year before the implementation of the transition pathway. This study aims to I) evaluate the effectiveness of the clinical transition pathway, II) evaluate the experiences and satisfaction of YP with the transitional process and evaluate their perceived self-management skills.
Young people with any jRMD transferred from the pediatric to the adult rheumatology department in our academic center were eligible to enroll in this quantitative cross-sectional observational study between 2009 and 2015. Notably in 2012, we created a dedicated adolescent JIA-clinic, located at the adult rheumatology department. Electronic patient records from all young people that were transferred between 2009 and 2015 were reviewed for drop-out of care. Young people were asked to rate a VAS for 'satisfaction with transition' and to complete the "on your own feet transfer experience scale" (OYOF-TES)-questionnaire regarding their experiences and satisfaction with transition. Self-management skills were measured with the "on your own feet self-efficacy scale" (OYOF-SES)-questionnaire.
One hundred fifty-four young people were transferred to the adult department, of which 76 were transferred to the dedicated adolescent JIA-clinic. The mean age at transfer was 17.8 years for YP transferred to the adult clinic and 15.2 years for transfer to the adolescent clinic. Drop-out of care rate one year after transfer was 5.1% in the adult clinic and 1.3% in the adolescent JIA-clinic. Response rate of the returned questionnaires was 61% for the adolescent JIA clinic and 36% for the adult clinic. There was no difference between responders and non-responders in demographics and disease type besides age (non-responders were significantly younger). Young people transferred to the adult and adolescent JIA-clinic both had high scores on the satisfaction scale (7.7 and 7.5 on the VAS-scale and 72.0 and 74.5 on the OYOF-TES). Self-efficacy scores were high for both groups, with OYOF-SES 59.7 for those transferred to the adult clinic and 58.2 for those transferred to the adolescent JIA-clinic.
The implementation of the clinical transition pathway has led to a substantial improvement of patient care during the transitional process leading to low drop-out of care rate and high scores on satisfaction with transition. High scores on the self-reported self-efficacy scale suggests confidence of young people to have achieved sufficient skills to successfully manage their disease.
2008年设立了针对青少年风湿性和肌肉骨骼疾病（jRMD）患者的临床过渡途径，旨在改善过渡护理。在实施该过渡途径的前一年，我们诊所的历史失访率为35%。本研究旨在：I）评估临床过渡途径的有效性，II）评估青少年患者对过渡过程的体验和满意度，并评估他们自我管理技能的感知情况。
2009年至2015年期间，在我们学术中心从儿科转至成人风湿科的任何jRMD患者均有资格参与这项定量横断面观察性研究。值得注意的是，2012年我们在成人风湿科设立了一个专门的青少年幼年特发性关节炎（JIA）诊所。对2009年至2015年期间所有转诊的青少年患者的电子病历进行审查，以确定是否存在护理失访情况。要求青少年患者对“过渡满意度”进行视觉模拟评分（VAS），并完成关于他们对过渡的体验和满意度的“独立过渡体验量表”（OYOF-TES）问卷。自我管理技能通过“独立自我效能感量表”（OYOF-SES）问卷进行测量。
154名青少年患者转至成人科室，其中76名转至专门的青少年JIA诊所。转至成人诊所的患者平均转诊年龄为17.8岁，转至青少年诊所的患者平均转诊年龄为15.2岁。转诊一年后的护理失访率在成人诊所为5.1%，在青少年JIA诊所为1.3%。青少年JIA诊所问卷的回复率为61%，成人诊所为36%。除年龄外，在人口统计学和疾病类型方面，回复者与未回复者之间没有差异（未回复者明显更年轻）。转至成人和青少年JIA诊所的患者在满意度量表上得分都很高（VAS量表上分别为7.7和7.5，OYOF-TES量表上分别为72.0和74.5）。两组的自我效能感得分都很高，转至成人诊所的患者OYOF-SES评分为59.7，转至青少年JIA诊所的患者为58.2。
临床过渡途径的实施在过渡过程中显著改善了患者护理，导致护理失访率低，过渡满意度得分高。自我报告的自我效能感量表得分高表明青少年有信心获得足够的技能来成功管理自己的疾病。
