Department of Pediatrics, Division of Pediatric Rheumatology and autoinflammation reference center Tuebingen (arcT), University Hospital Tuebingen, Tuebingen, Germany.
Centre for Interdisciplinary Clinical Immunology, Rheumatology and Autoinflammatory Diseases and Department of Internal Medicine II (Oncology, Hematology, Immunology, Rheumatology, Pulmology), University Hospital Tuebingen, Tuebingen, Germany.
Pediatr Rheumatol Online J. 2022 Dec 27;20(1):121. doi: 10.1186/s12969-022-00776-6.
A significant number of patients in pediatric rheumatology suffer from ongoing disease activity into adulthood and thus need to be transferred into adult care. Transition as a structured individual process of preparation and patient empowerment can reduce risks of adverse long-term outcomes. The aim of this study was to measure long-term transition outcomes such as health-related quality of life (HR-QoL), patient satisfaction, and continuity of care in former patients of the interdisciplinary Tuebingen Transition Program (TTP).
In an iterative team process, a standardized questionnaire was developed including the EQ-5D-5L to measure HR-QoL, visual analogue scales to measure various items of patient satisfaction, further questions on continuity of care and physical activity and physician global assessment (PGA) to determine disease activity. HR-QoL and physical activity were compared to data from the average German population. Data was analyzed descriptively, and a logistic regression analysis was performed to identify possible predictive factors for negative outcomes.
Response rate was 28.8% (85/295), 70.6% were female and median age was 24.1 years. 70.6% were diagnosed with juvenile idiopathic arthritis (JIA). Overall, HR-QoL was high (79.8 on the EQ VAS), yet lower than in the average population. The study cohort was more physically active than the respective average age groups. Mean patient satisfaction with pediatric care (8.4; standard deviation (SD) 1.7) and with the transition program (7.9; SD 2.6) was higher than with adult care (7.7; SD 2.2). 76.5% of participants received regular rheumatologic care after transfer. After excluding all participants in remission, the drop-out rate was 4.7%. A low PGA at the time of transfer was associated with higher HR-QoL and patient satisfaction after transfer.
HR-QoL of adult patients after successful transfer to adult rheumatology is reduced compared to the general population but physical activity and achievement of clinical remission could help to prevent negative long-term outcomes. Patient satisfaction and self-management of TTP patients were generally high, whereas youth-specific issues and their impact on the disease mandate greater attention. Treatment discontinuation rates were low and mostly due to remission. Further studies should focus on the identification of early predictors of long-term outcome to improve the process and outcome of transition.
相当数量的儿科风湿病患者在成年后仍存在疾病活动，因此需要转至成人护理。作为一个结构化的个体准备和患者赋权过程，过渡可以降低不良长期结局的风险。本研究的目的是测量前图宾根跨学科过渡项目（TTP）患者的长期过渡结局，如健康相关生活质量（HR-QoL）、患者满意度和护理连续性。
在迭代团队过程中，开发了一个标准化问卷，包括 EQ-5D-5L 来测量 HR-QoL，视觉模拟量表来测量患者满意度的各个项目，进一步的问题是关于护理连续性和体力活动以及医生总体评估（PGA）来确定疾病活动。HR-QoL 和体力活动与德国普通人群的数据进行了比较。数据进行了描述性分析，并进行了逻辑回归分析，以确定负面结果的可能预测因素。
应答率为 28.8%（85/295），70.6%为女性，中位年龄为 24.1 岁。70.6%被诊断为幼年特发性关节炎（JIA）。总体而言，HR-QoL 较高（EQ VAS 为 79.8），但低于普通人群。研究队列比相应的年龄组更活跃。患者对儿科护理（8.4；标准差（SD）1.7）和对过渡项目（7.9；SD 2.6）的满意度高于对成人护理（7.7；SD 2.2）的满意度。76.5%的参与者在转移后接受了常规风湿病护理。排除所有缓解的参与者后，辍学率为 4.7%。转移时 PGA 较低与转移后较高的 HR-QoL 和患者满意度相关。
成功转至成人风湿病科的成年患者的 HR-QoL 低于普通人群，但体力活动和达到临床缓解有助于预防不良的长期结局。TTP 患者的满意度和自我管理普遍较高，而青年特有的问题及其对疾病的影响需要更多关注。治疗中断率较低，主要是由于缓解。进一步的研究应侧重于确定长期结局的早期预测因素，以改善过渡的过程和结局。
