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

• Main Authors: Rebecca N. Jerome (Author), Jill M. Pulley (Author), Terri L. Edwards (Author), Alyssa B. Dickerson (Author), Douglas Conway (Author), Sara L. Van Driest (Author), Gordon R. Bernard (Author), Paul A. Harris (Author)
• Format: Book
• Published: SpringerOpen, 2019-04-01T00:00:00Z.
• Subjects: article
• Online Access: Connect to this object online.
• Notes: 10.1186/s41687-019-0117-2; 2509-8020
• Keywords: Personalized medicine; Autism spectrum disorders; Attention deficit hyperactivity disorder; N-of-1 studies; Patient reported outcomes; Patient engagement; Public aspects of medicine; RA1-1270
• Source: Journal of Patient-Reported Outcomes, Vol 3, Iss 1, Pp 1-8 (2019)

Abstract Background 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. Methods 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. Results 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. Discussion 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.