Jerome Rebecca N, Pulley Jill M, Edwards Terri L, Dickerson Alyssa B, Conway Douglas, Van Driest Sara L, Bernard Gordon R, Harris Paul A
Vanderbilt Institute for Clinical and Translational Research, 2525 West End Avenue, Suite 600, Nashville, Tennessee, 37203, USA.
Departments of Pediatrics and Medicine, Vanderbilt University Medical Center, 2200 Children's Way, 8232 Doctors' Office Tower, Nashville, TN, 37232, USA.
J Patient Rep Outcomes. 2019 Apr 29;3(1):25. doi: 10.1186/s41687-019-0117-2.
Finding the optimal treatment for a chronic condition can be a complex and lengthy endeavor for both the patient and the clinician. To address this challenge, we developed an "N-of-1" quality improvement infrastructure to aid providers and patients in personalized treatment decision-making using systematic assessment of patient-reported outcomes during routine care.
Using the REDCap data management infrastructure, we implemented three pediatric pilots of the Treatment Assessments in the Individual Leading to Optimal Regimens (TAILOR) tool, including children receiving early intervention, children with attention deficit hyperactivity disorder, and children with challenging behaviors in the classroom setting. This retrospective review of data summarizes utilization and satisfaction data during our pilot experience with the tool.
The three pilots included a combined total of 109 children and 39 healthcare providers, with 67 parents and 77 teachers invited to share data using brief surveys administered using TAILOR. Overall survey response rates ranged from 38% to 84% across the three pilots, with response rates notably higher among teachers as compared with parents. Satisfaction data indicated positive impressions of the tool's utility.
These experiences show the utility of the TAILOR framework for supporting collection and incorporation of patient-reported outcomes into the care of individuals with chronic conditions.
为慢性病找到最佳治疗方案对患者和临床医生而言都是一项复杂且漫长的工作。为应对这一挑战,我们开发了一种“单病例”质量改进基础设施,以通过在常规护理期间系统评估患者报告的结果,帮助医疗服务提供者和患者进行个性化治疗决策。
利用REDCap数据管理基础设施,我们实施了三项针对“个体治疗评估以达成最佳治疗方案”(TAILOR)工具的儿科试点项目,其中包括接受早期干预的儿童、患有注意力缺陷多动障碍的儿童以及在课堂环境中有挑战行为的儿童。对数据的这项回顾性分析总结了我们在该工具试点过程中的使用情况和满意度数据。
这三项试点项目总共纳入了109名儿童和39名医疗服务提供者,邀请了67名家长和77名教师使用TAILOR提供的简短调查问卷来分享数据。在这三项试点项目中,总体调查回复率在38%至84%之间,教师的回复率明显高于家长。满意度数据表明对该工具的实用性有积极评价。
这些经验表明TAILOR框架在支持收集患者报告的结果并将其纳入慢性病患者护理方面的实用性。