Advancing the Science of Pediatric Patient Reported Outcomes for Children with Chronic Disease – or PEPR, for short
Improving treatment, outcomes, and wellbeing are important to ensuring that young patients growing up with a rheumatic disease live well, feel and are heard. The PEPR study seeks to both broaden and deepen our understanding of the social, emotional and physical functioning of children and adolescents living with chronic diseases – including pediatric onset rheumatic diseases – so that we can improve the effectiveness of treatments and the quality of life of young people affected by rheumatic diseases.
PEPR is funded by the National Institutes of Health. PEPR has been partnering with the CARRA registry to enroll CARRA participants into a study to collect clinical and patient-reported outcomes measures (or PROs), with the aim of validating PROs to better measure the experiences of children and adolescents with chronic conditions, and their families. PEPR is approaching this by comparing the results of brief structured self-report measures of a young person’s social, emotional, and physical functioning against clinical measures of their disease activity. Validating “measures that matter” is anticipated to generate important actionable insights into the experience of patients so that treatments are best used and their effectiveness thoughtfully evaluated against a patient’s lived experiences.
The PEPR study enrolled 451 CARRA Registry dyads (patient and caregiver), including 393 participants with JIA and 58 with pSLE from 7 CARRA Registry sites. Patients and caregivers will be followed every 6 months for a year. Enrolled youth, and their parents, complete a battery of PROs on a tablet computer at the same time that clinical data are collected about them. They do this repeatedly over the course of a series of regular CARRA related clinic visits. In so doing, changes in how patients are feeling and doing as measured in their PROs can be compared to clinical reports about them recorded by providers.
There are several CARRA investigators involved in PEPR, including:
Dr. Elissa Weitzman, at Boston Children’s Hospital and Harvard Medical School
Dr. Laura Schanberg, at Duke University School of Medicine
Dr. Emily von Scheven, at the University of California San Francisco Department of Pediatrics and Benioff Children’s Hospital
Dr. Sarah Ringold, at Seattle Children’s Hospital and the University of Washington School of Medicine
The PEPR CARRA study is part of a larger consortium. The Pediatric Patient Reported Outcomes in Chronic Diseases (PEPR) Consortium.
PEPR is funded by the National Institutes of Health (NIH) and administered by the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS).
Dr. Weitzman leads an additional PEPR-related study, called PEPR Social Media (or PEPR SM).
What is PEPR Social Media? PEPR Social Media is a PEPR sub-study that seeks to understand how adolescents use social media in relation to their rheumatic disease, and how we might use social media to better understand and reach patients.
Why PEPR Social Media? The PEPR Social Media study is important because so many patients use social media. But we don’t yet know if or how we might be able to use this to improve research, care, and support of patients with chronic rheumatic conditions.
How does PEPR Social Media work? PEPR Social Media will answer these questions in two ways:
What is involved in PEPR Social Media for me? When you enroll in the PEPR Social Media study, you will be given an iPad to complete a survey about how you’ve been feeling and your social media use. You can participate in the study even if you don’t use social media. You will have the option of sharing your social media posts with the study for two short periods (for 2 weeks when you first join the study, and 2 weeks around one of your next follow-up clinic visits). Your data is private, meaning no one will know it is you who answered the survey questions or made the posts. Doctors will also be entering information into the CARRA registry about how you are doing.
PEPR SM is funded by the NIH/NIAMS grant number R21AR070944.