青少年和青年慢性遗传性皮肤病患者的过渡准备情况。
Transition readiness in adolescents and young adults with chronic genetic skin conditions.
机构信息
Department of Dermatology, Northwestern University Feinberg School of Medicine, Chicago, Illinois, USA.
Department of Medical Social Sciences, Northwestern University Feinberg School of Medicine, Chicago, Illinois, USA.
出版信息
Pediatr Dermatol. 2023 Jul-Aug;40(4):621-626. doi: 10.1111/pde.15330. Epub 2023 Apr 20.
BACKGROUND/OBJECTIVES: Healthcare transition (HCT) refers to movement from pediatric to adult healthcare models. Lack of HCT preparation contributes to poor health outcomes. This study measures readiness to transition in individuals with genetic skin conditions.
METHODS
Participants signed IRB-approved consents/assents. Participants ages 14-22 years with genetic skin disorders were surveyed with measures of QoL (Children's Dermatology Life Quality Index/CDLQI or DLQI) and HCT readiness using the Transition Readiness Assessment Questionnaire (TRAQ) and adapted non-validated measures of Skin Knowledge and Psychosocial Factors (5 = highest readiness). Mean TRAQ was compared with historical data on controls and other chronic conditions (t-tests) and correlated (Pearson) with Skin Knowledge and Psychosocial. Multivariable regression compared demographics and QoL with transition readiness.
RESULTS
A total of 45 participants were enrolled (mean age 17.8 years, 67% female, 71% White; disorders of cornification [n = 31], ectodermal dysplasias [n = 7], epidermolysis bullosa [n = 4], tuberous sclerosis [n = 3]). Mean TRAQ (3.3 ± 0.9) was lower than controls (3.9; p < .001) and some chronic disorders (sickle cell [3.7; p < .05], type 1 diabetes [3.7; p < .01]), but higher than with spina bifida (2.8; p < .001) and congenital heart disease (2.9; p < .01). Mean Skin Knowledge was 4.2 ± 1.0, and mean Psychosocial was 3.4 ± 0.8. TRAQ correlated strongly with Skin Knowledge (r = .61; p < .05), but not Psychosocial (r = .12; p = .6). Ages 14-17 years versus 18-22 years and public versus private insurance predicted lower TRAQ scores. Poor DLQI predicted higher TRAQ and Skin Knowledge, but poor DLQI and CDLQI predicted lower Psychosocial.
CONCLUSIONS
Adolescents and young adults with genetic skin disorders demonstrated low transition readiness, especially among younger-aged and lower socioeconomic groups. We recommend a HCT intervention to improve health outcomes.
背景/目的：医疗保健过渡（HCT）是指从儿科医疗保健模式向成人医疗保健模式的转变。缺乏 HCT 准备会导致健康状况不佳。本研究旨在衡量遗传皮肤疾病患者的过渡准备情况。
方法
参与者签署了机构审查委员会批准的同意书/同意书。14-22 岁患有遗传性皮肤疾病的参与者接受了生活质量（儿童皮肤病生活质量指数/CDLQI 或 DLQI）和 HCT 准备情况的调查，使用过渡准备评估问卷（TRAQ）和经过改编的非验证性皮肤知识和心理社会因素测量（5 表示最高准备）。TRAQ 的平均值与对照和其他慢性疾病的历史数据进行比较（t 检验），并与皮肤知识和心理社会因素进行相关（皮尔逊）。多变量回归比较了人口统计学和生活质量与过渡准备的关系。
结果
共纳入 45 名参与者（平均年龄 17.8 岁，女性占 67%，白种人占 71%；角化障碍[31 例]、外胚层发育不全[7 例]、大疱性表皮松解症[4 例]、结节性硬化症[3 例]）。TRAQ 的平均值（3.3±0.9）低于对照组（3.9；p<.001）和一些慢性疾病（镰状细胞病[3.7；p<.05]、1 型糖尿病[3.7；p<.01]），但高于脊柱裂（2.8；p<.001）和先天性心脏病（2.9；p<.01）。皮肤知识的平均值为 4.2±1.0，心理社会的平均值为 3.4±0.8。TRAQ 与皮肤知识高度相关（r=0.61；p<.05），但与心理社会因素不相关（r=0.12；p=0.6）。14-17 岁与 18-22 岁、公共保险与私人保险与较低的 TRAQ 评分相关。较差的 DLQI 预测 TRAQ 和皮肤知识较高，但较差的 DLQI 和 CDLQI 预测心理社会较低。
结论
遗传性皮肤疾病的青少年和年轻成年人过渡准备不足，尤其是在年龄较小和社会经济地位较低的人群中。我们建议进行 HCT 干预，以改善健康结果。
Zotero 插件