Department of Pediatric Rheumatology, Kocaeli University, Kocaeli, Turkey.
Department of Pediatric Rheumatology, University of Health Sciences, Başakşehir Çam ve Sakura City Hospital, Istanbul, Turkey.
Int J Rheum Dis. 2021 Mar;24(3):397-401. doi: 10.1111/1756-185X.14050. Epub 2021 Jan 15.
Transition is a planned process of pediatric patients from child-centered to adult-oriented treatment. Transitional care for patients with chronic diseases is essential. The present study aimed to evaluate the readiness of patients with rheumatic diseases and their parents for transition process.
This is a cross-sectional, single-center study. All patients and their parents were questioned about their awareness of and willingness to undergo transitional care. Transition Readiness Assessment Questionnaire (TRAQ) was applied to all the participants. TRAQ is a tool for measuring readiness for transitional care in adolescents with chronic diseases. TRAQ includes 20 items that are divided into 2 domains: self-management and self-advocacy.
A total of 157 (87 girls/70 boys) patients and their parents were enrolled. Of them 64 were diagnosed with familial Mediterranean fever, 52 with juvenile idiopathic arthritis, 21 with systemic lupus erythematosus, and 20 with Behçet's disease. The median age of the patients was 16 years (15-18). However, all patients and parents accepted that transition to adult-oriented care is necessary; only one-third of them were aware about transitional care. Eighty (50.9%) patients and 147 (93.6%) of the parents stated that they were wishing to continue pediatric rheumatology treatment. The mean TRAQ self-management domain and self-advocacy domain total scores in the patients were 1.76 ± 0.51 and 1.72 ± 0.49, respectively (P = .48). The mean TRAQ total score was not different between patients and parents. When we assessed the factors affecting transition process, the TRAQ score was lower among patients with active disease, and requiring hospitalization during the previous year.
Assessment od the readiness of patients with chronic rheumatic diseases for transition care will increase the awareness of patients and their parents as well, and provide determination of the optimal time for transition.
过渡是指儿科患者从以儿童为中心的治疗向以成人为导向的治疗的计划性转变。慢性病患者的过渡护理至关重要。本研究旨在评估风湿性疾病患者及其父母对过渡过程的准备情况。
这是一项横断面、单中心研究。所有患者及其父母均被询问对过渡性护理的认识和意愿。所有参与者均应用过渡准备评估问卷（TRAQ）进行评估。TRAQ 是一种用于衡量青少年慢性病过渡护理准备情况的工具。TRAQ 包括 20 个项目，分为两个领域：自我管理和自我倡导。
共纳入 157 名（87 名女孩/70 名男孩）患者及其父母。其中 64 名被诊断为家族性地中海热，52 名被诊断为幼年特发性关节炎，21 名被诊断为系统性红斑狼疮，20 名被诊断为贝切特病。患者的中位年龄为 16 岁（15-18 岁）。然而，所有患者及其父母均接受向成人导向的护理过渡是必要的；只有三分之一的人了解过渡性护理。80 名（50.9%）患者和 147 名（93.6%）父母表示希望继续接受儿科风湿病治疗。患者的 TRAQ 自我管理领域和自我倡导领域总分分别为 1.76±0.51 和 1.72±0.49（P=0.48）。患者和父母的 TRAQ 总分无差异。当我们评估影响过渡过程的因素时，患有活动期疾病和/或去年需要住院治疗的患者的 TRAQ 评分较低。
评估慢性风湿性疾病患者对过渡护理的准备情况将提高患者及其父母的认识，并确定过渡的最佳时间。
