Health Literacy and Information Management in ADHD: Designing an Optimal Record

描述（由申请人提供）：健康素养是患者和提供者之间成功传递信息的一个组成部分。患有注意力缺陷/多动障碍（ADHD）儿童的父母在慢性护理中发挥着至关重要的作用，因为他们为提供者提供关键信息，推动适当的教育和疾病管理。我们建议开发和评估一种电子数据输入工具，使父母能够交流对治疗孩子至关重要的数据，而不管他们自己的读写能力如何。该研究计划解决了以患者为中心的信息管理的核心问题：1)基于计算机的、个人控制的健康记录（PCHR）应该如何有效地直接从患者那里收集数据，以及2)健康素养如何影响父母对ADHD数据的报告以及父母与提供者沟通产生的过程级事件？本提案的具体目标如下：识别和实现数据输入界面的关键功能，为父母报告adhd相关信息创造跨文化水平的最大可用性，目标2。评估健康素养对成功完成父母报告的纸质和PCHR格式的ADHD健康信息以及目的3的影响。确定健康素养与ADHD过程水平结果之间的关系，这些结果源于父母-提供者的信息交流。PCHR开发过程中的形成性研究方法将使用一对一的认知访谈、焦点小组和结构化可用性测试。正式的评估将在一项随机试验中对不同队列的父母进行数据输入（论文与PCHR），以获取adhd特定信息。该队列儿童的初级保健记录将在过去12个月期间进行分析。将对记录在案的ADHD护理过程进行回顾性检查，并对PCHR数据的实用性进行前瞻性评估。识字水平是整个评估的主要变量。这项工作解决了卫生和人类服务部的两个卫生信息技术目标：为临床医生提供最新患者数据的连接性和促进患者参与护理。研究结果将提供一种可用和有用的技术产品，克服与识字有关的障碍，从而改善对最常见的儿科精神健康障碍的护理。

DESCRIPTION (provided by applicant): Health literacy is an integral part of the pathway for the successful transfer of information between patients and providers. Parents of children with Attention Deficit/ Hyperactivity Disorder (ADHD) play an essential role in chronic care as they offer critical information to providers that drives appropriate education and disease management. We propose the development and evaluation of an electronic data entry tool that enables parents to communicate data essential to treatment of their children, regardless of their own literacy skills. The research plan addresses questions central to patient-centered information management: 1) how should a computer-based, personally controlled health record (PCHR) look and function to effectively gather data directly from patients, and, 2) how does health literacy influence parents' report of data on ADHD and the process-level events that result from parent-provider communication? The following specific aims organize the proposal: Aim 1. To identify and implement key features of data entry interfaces that create maximal usability across literacy levels for parental report on ADHD-related information, Aim 2. To assess the effect of health literacy on successful completion of parent-reported ADHD health information in both paper-based and PCHR formats, and Aim 3. To determine the association between health literacy and process-level outcomes for ADHD that stem from parent-provider exchange of information. Formative research methods during PCHR development will use one on one cognitive interviews, focus groups, and structured usability testing. The formal evaluation will study a diverse cohort of parents in a randomized trial of data entry (paper versus PCHR) for ADHD-specific information. Primary care records for children of this cohort will be analyzed for the prior 12 month period. Both a retrospective examination of documented ADHD processes of care and a prospective evaluation of the utility of data from the PCHR will occur. Literacy level is a primary variable of interest throughout the evaluation. This work addresses two health information technology goals of the Department of Health and Human Services: connectivity that provides clinicians with up-to-date patient data and the promotion of patient involvement in care. Findings will provide a usable and useful technology product that overcomes literacy related barriers and thereby improves care for the most common pediatric mental health disorder.