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途径的一个组成部分。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，因为他们向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他们的孩子至关重要的数据，而不考虑他们自己的识字技能。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)应该如何看起来和发挥作用，以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报告ADHD的数据，以及父母与提供者沟通产生的过程级事件？组织这项提议的具体目标如下：目标1.确定和实施数据输入界面的关键特征，这些关键特征为ADHD相关信息的父母报告创造最大的识字水平可用性；目标2.评估健康素养对成功完成基于纸质和PCHR格式的父母报告的ADHD健康信息的影响；以及目标3.确定健康素养与源于家长-提供者信息交换的ADHD过程级结果之间的关联。PCHR开发过程中的形成性研究方法将使用一对一认知访谈、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研究不同的父母队列，以获取ADHD特定信息的数据输入(纸质与PCHR)。这组儿童的初级保健记录将分析前12个月的情况。将对记录在案的ADHD护理过程进行回顾检查，并对PCHR数据的实用性进行前瞻性评估。在整个评价过程中，识字水平是一个主要的关注变量。这项工作涉及卫生与公众服务部的两个健康信息技术目标：向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。这些发现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.