We\u2019re not all cut from the same cloth: TAILORing treatments for children with chronic conditions

Rebecca N Jerome,Alyssa B Dickerson,Douglas Conway,Paul A Harris,Terri L Edwards,Gordon R Bernard,Sara L Van Driest,Jill M Pulley

doi:10.1186/s41687-019-0117-2

Rebecca N Jerome, Alyssa B Dickerson + Show 6 more

Open Access

https://doi.org/10.1186/s41687-019-0117-2

Copy DOI

Abstract

BackgroundFinding 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.MethodsUsing 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.ResultsThe 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.DiscussionThese 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.

Highlights

Finding the optimal treatment for a chronic condition can be a complex and lengthy endeavor for both the patient and the clinician
In an attempt to create a solution that goes beyond these limited Electronic health record (EHR) tools, we developed a quality improvement (QI) infrastructure to support “N-of-1” treatment decision-making using patient-reported outcomes – the Vanderbilt TAILOR tool
In the attention deficit hyperactivity disorder (ADHD) project, the majority of parents elected to include a teacher in the data collection process, with 22 teachers receiving a diagnostic and/or treatment follow-up assessment via the TAILOR tool

Summary

Introduction

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. The EHR tools that are available for capturing patient-reported outcomes are difficult to implement, rigid in terms of functionality, and limited in terms of physicians’ ability to review data from outside the EHR These tools are challenging to incorporate into routine care for decision-making and course correction [8, 18]. In an attempt to create a solution that goes beyond these limited EHR tools, we developed a quality improvement (QI) infrastructure to support “N-of-1” treatment decision-making using patient-reported outcomes – the Vanderbilt TAILOR tool

Methods

Results

Discussion

Conclusion