A99: Symptom and Treatment Characteristics of Juvenile Primary Fibromyalgia Syndrome in the CARRA Registry: Are Males and Females Created Equal?

BACKGROUND/PURPOSE: Children and adolescents with juvenile primary fibromyalgia syndrome (JPFS) often present to pediatric rheumatologists for evaluation. Limited data are available on the characteristics of and treatments used for JPFS, particularly in males.

METHODS: We evaluated deidentified data from baseline visits of JPFS patients entered in the Childhood Arthritis & Rheumatology Research Alliance (CARRA) registry between May 2010 and September 2013. Data regarding demographics, symptoms, functional measures and treatment are compared as a function of gender.

RESULTS: There were 172 patients (27 males), ages 8-21 years (Mean (M) = 15.4 +/- 2.3). Patients were symptomatic for a mean of 1.7 +/- 2.2 years prior to their first visit, with no significant difference between males and females (M = 2.2 vs. 1.6 respectively, t(169) = 1.19, p = .2). Widespread pain (89%), fatigue (83%), disordered sleep (77%), headaches (61%), and extremity numbness/tingling (32%) were the most commonly reported symptoms. Females had more numbness and tingling (35% vs. 13% respectively, χ(2) = 4.4, p = 0.04). Table lists treatments used. Males were significantly more likely to have used gabapentin (26% vs. 8%, χ(2) = 7.6, p <0.01). Of the 63 patients using non-pharmacologic treatment, females were significantly more likely to have used massage and yoga. Over 50% of patients received education on JPFS, sleep hygiene, and general counseling. Graded aerobic activity and physical therapy were commonly prescribed. Less then 10% of patients tried opioids, serotonin norepinephrine reuptake inhibitors, craniosacral therapy, hypnosis, and biofeedback. [Table: see text] Mean pain scores were moderate to severe (6.3 +/- 2.5/10) and were significantly positively related to Childhood Health Assessment Questionnaire (CHAQ) scores (r = .3, p <.01), patient ratings of impairment in health-related quality of life (HRQOL) (r = .4, p < .01), and patient ratings of impairment in overall well-being (r = .6, p < .01) both for males and females. Males were more disabled based on subjective (patient/parent report) functioning measures (HRQOL and CHAQ), although no differences were observed on physician report measures (physician global assessment and ACR functional class).

CONCLUSION: Based on data from the largest known cohort of JPFS patients, there are few significant gender differences in physician assessment of disease activity. However, higher levels of disability reported by male patients suggest the need to consider gender when evaluating and treating JPFS patients. Possible explanations for the discrepancies in treatment include effects of gender on physician's perception of patient's pain leading to more medication use among males or females being more willing to try non-pharmacologic modes of treatment. Future studies on gender and treatment outcomes are needed to improve care for these patients.