Division of Pediatric Urology, Riley Hospital for Children, Indiana University School of Medicine, 705 Riley Hospital Drive, Suite 4230, Indianapolis, IN, 46202, USA.
Division of Pediatric Urology, Riley Hospital for Children, Indiana University School of Medicine, 705 Riley Hospital Drive, Suite 4230, Indianapolis, IN, 46202, USA.
J Pediatr Urol. 2020 Feb;16(1):45.e1-45.e7. doi: 10.1016/j.jpurol.2019.10.017. Epub 2019 Oct 25.
Patients with spina bifida (SB) often have cognitive impairments making the difficult transition process to adult care even more challenging.
The objective of this study was to identify what patient factors impact transition readiness in this population. It is hypothesized that young adults with SB with more healthcare exposure were more likely to report readiness to transition.
Consecutive patients ≥18 years old in the adult SB clinic were evaluated using the validated Transition Readiness Assessment Questionnaire (TRAQ, 8/17-5/18). Five TRAQ domains assess 20 skills necessary to transition. Responses are 1 No, I do not know how"; 2 No, but I want to learn"; 3 No, but I am learning how to do this"; 4 Yes, I have started doing this"; 5 Yes, I always do this when I need to" (considered "fully transitioned"). Demographics, ambulatory status, shunt status, shunt revisions, number of medications, and prior bladder augmentation were assessed. Domain and total TRAQ scores were analyzed using non-parametric statistics and linear regression.
Ninety-six patients (60.4% females, 70.8% shunted) participated at median age 25.5 years. Overall median TRAQ score was 4.0/5.0, indicating that patients were starting to transition. On univariate analysis, age >25 years was associated with higher TRAQ scores across every domain and overall (P ≤ 0.01). Female gender was also associated with higher TRAQ scores for "Appointment Keeping," "Tracking Health Issues" and overall (P ≤ 0.03). Race, ambulatory status, shunt status, number of shunt revisions, number of medications, and prior bladder augmentation were not associated with TRAQ scores (P ≥ 0.12). After adjusting for gender on bivariate analysis, age >25 years was associated with higher TRAQ scores for "Appointment Keeping," "Tracking Health Issues," "Talking with Providers," and "Managing Daily Activities" domains and overall (P ≤ 0.03), but not the "Managing Medications" domain (P = 0.07). Female gender was not independently associated with higher domain or overall TRAQ scores (P≥0.10).
The transition readiness of young adults with SB compared based on demographic factors and factors increasing healthcare exposure is described. Limitations include the small sample size, potentially limiting generalizability, as well as cross-sectional nature.
Transitioning adults with SB had TRAQ scores indicating that they were not yet fully transitioned in terms of their healthcare-related behavior. Older age was the only factor associated with transition readiness, which was not impacted by other demographics. Increased attention to transition readiness and consideration of a longer transition process in this population is necessary.
患有脊柱裂(SB)的患者通常存在认知障碍,这使得他们更难以顺利过渡到成人护理。
本研究的目的是确定哪些患者因素会影响该人群的过渡准备情况。假设在 SB 成人诊所接受过更多医疗保健的年轻人更有可能报告准备好过渡。
对≥18 岁的连续患者使用经过验证的过渡准备评估问卷(TRAQ,2018 年 8 月 17 日至 5 月 18 日)进行评估。TRAQ 有五个领域评估 20 项过渡所需的技能。回答是 1.不,我不知道怎么做;2.不,但我想学习;3.不,但我正在学习如何做;4.是,我已经开始做了;5.是,我需要时总是这样做"(被认为是"完全过渡")。评估人口统计学、活动能力、分流状态、分流修订、药物数量和先前的膀胱扩张情况。使用非参数统计和线性回归分析域和总 TRAQ 分数。
96 名患者(60.4%女性,70.8%分流)参与,中位年龄为 25.5 岁。总体中位数 TRAQ 评分为 4.0/5.0,表明患者开始过渡。在单变量分析中,年龄>25 岁与每个领域和整体的 TRAQ 评分较高相关(P≤0.01)。女性性别也与"保持预约"、"跟踪健康问题"和整体 TRAQ 评分较高相关(P≤0.03)。种族、活动能力、分流状态、分流修订次数、药物数量和先前的膀胱扩张与 TRAQ 评分无关(P≥0.12)。在二元分析中调整性别后,年龄>25 岁与"保持预约"、"跟踪健康问题"、"与提供者交谈"和"管理日常活动"领域以及整体的 TRAQ 评分较高相关(P≤0.03),但与"管理药物"领域无关(P=0.07)。女性性别与 TRAQ 评分较高的领域或整体无关(P≥0.10)。
根据人口统计学因素和增加医疗保健暴露的因素描述了年轻 SB 患者的过渡准备情况。局限性包括样本量小,可能限制了普遍性,以及横断面性质。
接受 SB 治疗的成年过渡者的 TRAQ 评分表明,他们在与医疗保健相关的行为方面尚未完全过渡。年龄是唯一与过渡准备相关的因素,不受其他人口统计学因素的影响。在该人群中,需要更加关注过渡准备,并考虑更长的过渡过程。