Precision medicine focuses on understanding individual variability in disease prevention, care, and treatment. The Precision Medicine Initiative, launched by President Obama in early 2015, aims to bring this approach to all areas of health care. However, few consumer-friendly resources exist for the public to learn about precision medicine and the conditions that could be affected by this approach to care. Genetics Home Reference, a website from the US National Library of Medicine, seeks to support precision medicine education by providing the public with summaries of genetic conditions and their associated genes, as well as information about issues related to precision medicine such as disease risk and pharmacogenomics. With the advance of precision medicine, consumer-focused resources like Genetics Home Reference can be foundational in providing context for public understanding of the increasing amount of data that will become available.
Background
The purpose of this study was to identify potential barriers to patient reported outcome measure (PROM) adoption with youth and young adults with intellectual and/or developmental disabilities (IDD) and to understand current PROM adoption patterns of paediatric practitioners working with this population.
Methods
We used a web‐based survey to collect data from paediatric practitioners who work with youth with IDD about factors influencing the adoption of PROMs and the frequency of PROM use across age groups (elementary, middle school and high school/transition age) and practice settings (school and rehabilitation).
Results
A total of 113 paediatric practitioners (occupational therapist = 48, physical therapist = 32, physician = 16, other = 17) responded to the survey with an average of 15 years of experience working with youth ages 8–21 with IDD. Accessibility and appropriateness, psychometric evidence, and time were most frequently ranked among the top three factors that influence practitioners' adoption of PROMs. Practitioners reported ‘never or rarely’ using PROMs 39%–65% of the time across age groups.
Conclusions
Our results suggest that paediatric practitioners may be infrequently using PROMs with youth with IDD because of perceived inaccessibility and time requirements of PROMs and practice‐environment barriers, including access to evidence and caseload demands. Because PROMs can facilitate client‐centred care, addressing these potential barriers to adoption may improve paediatric rehabilitation.
Date Presented Accepted for AOTA INSPIRE 2021 but unable to be presented due to online event limitations.
Patient-reported outcome measure (PROM) adoption with youth with intellectual and developmental disabilities (IDD) faces obstacles but is important for client-centered care. We collected data from pediatric practitioners who work with youth with IDD (N = 113) about factors influencing PROM adoption and the frequency of PROM use by age. Results suggest evidence, time, and accessibility are important factors for PROM adoption, and clinicians infrequently use PROMs with this population.
Primary Author and Speaker: Kimberly Greenberg
Additional Authors and Speakers: Ariel E. Schwartz
Contributing Authors: Jessica Kramer
Date Presented 03/28/20
The collaboration between OT and engineering can bring complementary perspectives together to create assistive technology that makes significant global impacts. In Colombia, two assessments were administered to identify factors that influence participation in home and community environments for individuals with ambulatory challenges. This research project provides a foundation for OT in Colombia to work with local engineering programs to identify home and community barriers.
Primary Author and Speaker: Lucy Tamberrino
Additional Authors and Speakers: Kimberly Greenberg, Karen Jacobs
Contributing Authors: Rebecca Pierce Khurshid, Marcela Múnera, Carlos Cifuentes
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