Pain in children with rheumatic diseases is common, yet work remains for pediatric rheumatologist and other allied health professionals to be able to assess and treat pain. A consistent and comprehensive approach is needed to effectively assess, treat, and monitor pain outcomes in the pediatric rheumatology population.
Our committee has continued to focus efforts on supporting ongoing projects and facilitating the execution of new project ideas that fall within the scope of the pain subcommittee. Some highlights of recent activities that have developed out of pain subcommittee work include the following:
- Susmita Kashikar-Zuck, PhD (Cincinnati Children’s) successfully secured a U34 grant from NIAMS for planning a multi-site trial of a combined neuromuscular training and cognitive-behavioral intervention for adolescents with juvenile primary fibromyalgia (“FIT Teens”). Additionally, Dr. Kashikar-Zuck successfully submitted the U01 application to NIAMS for a November 2015 deadline; if the application is funded, trial activities will begin in June 2015 at Cincinnati and several other CARRA sites
- Jennifer Stinson, PhD (Hospital for Sick Children) has continued work (funded by The Arthritis Society) on developing an app that provides adolescents with JIA tailored advice on pain management based on their ongoing input.
- Mark Connelly, PhD (Children’s Mercy, Kansas City) recently received an R21 grant from AHRQ that involves using the new CARRA registry to help disseminate the app and to integrate daily pain data from the app back into the registry for secondary analyses.
- Alexis Boneparth, MD (Rutgers) recently submitted a grant to a local foundation (New Jersey Health Foundation) for funding a “proof of concept” project evaluating small fiber neuropathy in juvenile fibromyalgia.
- Jennifer Weiss, MD (Hackensack) had an abstract accepted for presentation at this year’s ACR/AHRP conference based on analyses of pain data in the CARRA legacy registry: “A Comparison of Pain and Disability, and Their Association Between Juvenile Primary Fibromyalgia Syndrome and Pediatric Rheumatic Diseases: Results from the Childhood Arthritis and Rheumatology Research Alliance Registry”
Our plans for 2016 include continued discussions and support for ongoing projects as well as vetting new goals for the group in light of the potential for increased access to funding for preliminary work. Some areas of interest include leveraging existing projects that incorporate patient-reported outcomes in order to enhance the understanding of pain and pain impact in fibromyalgia and other pediatric rheumatologic diseases, evaluating mechanisms of chronic pain development in rheumatologic disease, and standardizing the approach to diagnosing juvenile fibromyalgia. William Bernal (UCSF) is our new Vice Chair and will be leading efforts to develop an online pain education module.
Pathogenic studies in families with twins or siblings discordant for systemic rheumatic disorders
Principal Investigators: Lisa Rider, MD, and Frederick Miller, MD, PhD; Environmental Autoimmunity Group, NIEHS, NIH, Bethesda, MD
Developing a standardized approach to the assessment of pain in children and youth presenting to pediatric rheumatology providers
Principal Investigator: Jennifer Stinson, RN, PhD, Hospital for Sick Children, Toronto, ON
Pain in children with rheumatic diseases in common, yet there is still no standardized method to assess this pain in children presenting to pediatric rheumatologist and other allied health professionals. Thus, a consistent, comprehensive, and clinically feasible approach is needed to effectively assess, treat, and monitor pain outcomes in the pediatric rheumatology population. The aim of this project is to develop and implement a Standardized Universal Pain Evaluation by Rheumatology providers for children and youth (SUPER-KIDZ) across all of the Childhood Arthritis and Rheumatology Research Alliance (CARRA) sites in North America.
- To develop consensus from rheumatologists and pediatric pain experts regarding the most important pain domains in a standardized pain assessment tool for use in pediatric rheumatology practice.
- To test the feasibility (i.e., number of missed responses, efficiency, errors, and acceptability) of three mediums (paper, laptop, and handheld-based applications) for administration.
Ultimately, the SUPER-KIDZ pain tools will assist pediatric rheumatologists and other health care professionals to use more consistent approaches to patient pain assessment such that pain management interventions and monitoring of pain outcomes in these children are more uniform across practices.