Demographic, clinical, and treatment characteristics of the juvenile primary fibromyalgia syndrome cohort enrolled in the Childhood Arthritis and Rheumatology Research Alliance Legacy Registry

Jenifer E Weiss,Kenneth N Schikler,Mark Connelly,Alexis D Boneparth

doi:10.1186/s12969-019-0356-z

Abstract

BackgroundTo describe the demographic, clinical, and treatment characteristics of youth diagnosed with juvenile primary fibromyalgia syndrome (JPFS) who are seen in pediatric rheumatology clinics.MethodsInformation on demographics, symptoms, functioning, and treatments recommended and tried were obtained on patients with JPFS as part of a multi-site patient registry (the Childhood Arthritis and Rheumatology Research Alliance Legacy Registry). Data were summarized using descriptive statistics. In a subset of patients completing registry follow-up visits, changes in symptoms, pain, and functioning were evaluated using growth modeling.ResultsOf the 201 patients with JPFS enrolled in the registry, most were Caucasian/White (85%), non-Hispanic (83%), and female (84%). Ages ranged from 9 to 20 years (M = 15.4 + 2.2). The most common symptoms reported were widespread musculoskeletal pain (91%), fatigue (84%), disordered sleep (82%), and headaches (68%). Pain intensity was rated as moderate to severe (M = 6.3 + 2.4/10). Scores on measures of functioning indicated mild to moderate impairment, with males observed to report significantly greater impairments. For the 37% of the initial cohort having follow-up data available, indicators of function and well-being were found to either worsen over time or remain relatively unchanged.ConclusionsThe symptoms of JPFS remained persistent and disabling for many patients treated by pediatric rheumatologists. Further study appears warranted to elucidate gender differences in the impact of JPFS symptoms. Work also is needed to identify accessible and effective outpatient treatment options for JPFS that can be routinely recommended or implemented by pediatric rheumatology providers.

Highlights

To describe the demographic, clinical, and treatment characteristics of youth diagnosed with juvenile primary fibromyalgia syndrome (JPFS) who are seen in pediatric rheumatology clinics
Study design We conducted a retrospective review of data from the Childhood Arthritis and Rheumatology Research Alliance (CARRA) Legacy Registry of JPFS patients enrolled between 2010 and 2014
Data were available from 201 patients (33 males) with JPFS enrolled across 23 unique clinical

Summary

Introduction

Clinical, and treatment characteristics of youth diagnosed with juvenile primary fibromyalgia syndrome (JPFS) who are seen in pediatric rheumatology clinics. Juvenile primary fibromyalgia syndrome (JPFS) is an idiopathic chronic pain syndrome thought to affect up to 6% of children and adolescents [1,2,3,4]. Clinical features of the condition were first described by Yunus and Masi in 1985 based on a sample of 33 children [5]. JPFS was characterized at that time as a pediatric condition primarily comprising widespread musculoskeletal pain, tender points at soft tissue sites, fatigue, poor sleep, headaches, paresthesia, and anxiety [5]. Contemporary understanding of how JPFS manifests has continued to be derived primarily from small samples of almost exclusively female patients seen in a few practices [2,3,4]. Conclusions from past studies on the impact and outcomes of JPFS may not be applicable to the entire spectrum of this heterogeneous population

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