Youth-Perceived Burden of Type 1 Diabetes: Problem Areas in Diabetes Survey-Pediatric Version (PAID-Peds).
Youth-Perceived Burden of Type 1 Diabetes: Problem Areas in Diabetes Survey-Pediatric Version (PAID-Peds).
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DOI：
10.1177/1932296815583506
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发表时间：
2015-04-24
影响因子：
5
通讯作者：
Laffel, Lori M B
中科院分区：
文献类型：
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作者：
Markowitz, Jessica T;Volkening, Lisa K;Laffel, Lori M B
背景：儿童期 1 型糖尿病的管理可能具有挑战性且难以承受。尽管有先进的治疗方法和新技术，但负担并没有减轻，因为目前的强化治疗方法并非不需要患者的参与。本研究旨在设计和验证青少年报告的与 1 型糖尿病管理相关的负担的衡量标准。方法：多学科儿科糖尿病团队根据先前验证的家长糖尿病相关负担衡量标准 (PAID-PR) 设计了这项调查；随后进行了调查修订和试点测试。 PAID-Peds 评估了过去一个月的 20 项负担。患有 1 型糖尿病的青少年（N = 126，年龄 8-17，接受胰岛素泵治疗或每日多次注射强化治疗）完成了这项新调查以及其他调查；父母完成了陪伴措施。电子病历和血糖仪下载提供了其他显着数据。 结果：PAID-Peds 显示出出色的内部一致性 (alpha = .94) 和可接受的重测可靠性（组内相关性 0.66，P < 0.0001）。 PAID-Peds 与青少年和家长对糖尿病特有的家庭冲突、血糖监测负面影响、抑郁症状、特质焦虑和生活质量的报告显着相关。它与年轻人的人口统计学或临床特征无关。结论：这项新的衡量标准（付费儿童）可能具有临床和研究实用性，尤其是在需要患者持续投入的新兴糖尿病技术时代。
BACKGROUND: Management of type 1 diabetes in childhood can be challenging and overwhelming. Despite availability of advanced treatments and new technologies, the burden has not decreased as current approaches to intensive therapy are not without need for patient involvement. This study aimed to design and validate a measure of youth-reported burden related to type 1 diabetes management.METHOD: A multidisciplinary pediatric diabetes team designed the survey, based on a previously validated parent measure of diabetes-related burden (PAID-PR); survey revisions and pilot testing followed. The 20-item PAID-Peds assesses burden over the past month. Youth with type 1 diabetes (N = 126, ages 8-17, intensively treated with insulin pump therapy or multiple daily injections) completed the new survey, along with other surveys; parents completed companion measures. Electronic medical records and blood glucose meter download provided other salient data.RESULTS: The PAID-Peds displayed excellent internal consistency (alpha = .94) and acceptable test-retest reliability (intraclass correlation .66, P < .0001). The PAID-Peds correlated significantly with both youth and parent reports of diabetes-specific family conflict, negative affect around blood glucose monitoring, depressive symptomatology, trait anxiety, and quality of life. It was not correlated with demographic or clinical characteristics of the youth.CONCLUSIONS: This new measure, the PAID-Peds, of youth-reported burden related to type 1 diabetes may have clinical and research utility, particularly in the current era of emerging diabetes technologies that require ongoing patient input.