特纳综合征患者及其家长对过渡准备情况的认知和相关因素。
Patient-parent perceptions of transition readiness in Turner syndrome and associated factors.
机构信息
Department of Pediatrics, Division of Endocrinology, Nationwide Children's Hospital, The Ohio State University College of Medicine, Columbus, Ohio, USA.
Center for Biostatistics, The Ohio State University College of Medicine, Columbus, Ohio, USA.
出版信息
Clin Endocrinol (Oxf). 2022 Feb;96(2):155-164. doi: 10.1111/cen.14584. Epub 2021 Sep 23.
OBJECTIVE
Medical care transition to adult care presents challenges for individuals with complex medical conditions such as Turner syndrome (TS). The goals of this study were to: (1) identify factors associated with transition readiness; (2) examine associations and differences between patients' and parents' perceptions of readiness using Transition Readiness Assessment Questionnaire (TRAQ).
METHODS
In a prospective cross-sectional study, girls with TS 12-25 years and one parent were recruited from 11/2019 to 12/2020. Three questionnaires were administered (demographic/clinical questionnaire, TRAQ, and TS Transition Readiness Assessment Questionnaire [TS-TRAQ]). Medical records were reviewed for karyotype and personal medical history. Descriptive statistics, Spearman's correlation, paired sample t tests, and linear regression were used to examine readiness and associated factors.
RESULTS
Of 44 eligible patients, 35 patients and 30 parents completed the study. Patient age, education, and life skills were associated with a higher TRAQ score (p < .001). Greater TS knowledge was associated with higher readiness (p < .05). Readiness score for patient and parental perception of patient's readiness were correlated (r = .83; p < .01). Within patient-parent dyads, patients had higher readiness (p < .01). TRAQ and TS-TRAQ scores were correlated (r = .69; p < .01).
CONCLUSIONS
Increasing patient age, patient education, life skills, confidence, and higher social/emotional scores were associated with a higher total TRAQ. Patient and parent perceived readiness were correlated and scores within dyads were different. Patients had higher perceived readiness. Positive correlations between TRAQ and TS-TRAQ suggest this tool may be a useful resource. Given the unique neurocognitive profile and social/emotional challenges among girls with TS, future research should include both patients and parents, and focus on validating TS-specific transition readiness tools.
目的
医疗保健向成人护理的过渡给特纳综合征（TS）等复杂疾病患者带来了挑战。本研究的目的是：（1）确定与过渡准备相关的因素；（2）使用过渡准备评估问卷（TRAQ）检查患者和家长对准备情况的看法之间的关联和差异。
方法
在一项前瞻性的横断面研究中，从 2019 年 11 月至 2020 年 12 月招募了 12-25 岁的 TS 女孩及其一名家长。共进行了三种问卷的评估（人口统计学/临床问卷、TRAQ 和 TS 过渡准备评估问卷 [TS-TRAQ]）。查阅了患者的核型和个人病史。使用描述性统计、Spearman 相关、配对样本 t 检验和线性回归来检查准备情况和相关因素。
结果
在 44 名符合条件的患者中，有 35 名患者和 30 名家长完成了研究。患者年龄、教育程度和生活技能与更高的 TRAQ 评分相关（p<0.001）。TS 知识越多，准备程度越高（p<0.05）。患者和家长对患者准备情况的感知之间存在相关性（r=0.83；p<0.01）。在患者-家长二人组中，患者的准备程度更高（p<0.01）。TRAQ 和 TS-TRAQ 评分之间存在相关性（r=0.69；p<0.01）。
结论
患者年龄、教育程度、生活技能、自信心和更高的社会/情绪得分的增加与 TRAQ 总分的提高有关。患者和家长对准备情况的感知存在相关性，二人组内的评分也不同。患者对准备情况的感知较高。TRAQ 和 TS-TRAQ 之间的正相关性表明该工具可能是一个有用的资源。鉴于 TS 患者存在独特的神经认知特征和社会/情绪挑战，未来的研究应包括患者和家长，并侧重于验证 TS 特定的过渡准备工具。
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