A84: Changes over Time in Symptoms and Treatment of Juvenile Primary Fibromyalgia Syndrome
Authors: Connelly Mark , Hoffart Cara , Schikler Kenneth , Boneparth Alexis , Weiss Jennifer E. 
Published: March 2014

Background/Purpose:There are limited data describing longitudinal trends of symptoms and outcomes among children seeking treatment for Juvenile Primary Fibromyalgia Syndrome (JPFS). Pediatric rheumatologists often are the first point of subspecialty contact for children and adolescents with JPFS and typically evaluate the outcome of their initial treatment recommendations over one or more follow‐up visits. Using baseline and follow‐up data entered into the Childhood Arthritis and Rheumatology Research Alliance (CARRA) registry for patients with JPFS, we sought to determine the extent to which symptoms, function, and treatment recommendations change over time in this patient population.Methods:Deidentified information on symptoms, treatments, and function (CHAQ scores, subjective well‐being numerical rating scale, and 5‐point HRQOL rating scale) were extracted from the CARRA registry for all baseline and follow‐up entries between May 2010 and September 2013. Data were analyzed for 66 patients (38% of the baseline cohort) having at least one follow‐up visit recorded in the registry; the follow‐up period ranged from 0.25 to 2.5 years from baseline (M = .88 years +/− .51 years). The analyzed cohort was 82% female and ranged in age (at baseline) from 9–21 years (M = 15.0 +/− 2.28 years). Multilevel growth models were used to determine time‐related trends in symptoms, function, and treatments since completion of baseline evaluation; logistic growth models were used for models with binary outcome variables.Results:Pain scores were in the moderate to severe range at baseline (M = 6.00/10, SD = 2.74) and significantly worsened over time (b = .43 ± .19, t(91) = 2.17, p = .03). Similarly, indicators of function and well‐being either worsened over time (for CHAQ: b = .10 ± .05, t(111) = 2.05, p = .04; for subjective well‐being: b = .67 ± .21, t(91) = 3.28, p <.01) or did not improve (for HRQOL: b = .03 ± .08, t(91) = .36, p = .72). These findings did not change when controlling for whether or not patients followed treatment recommendations. The likelihood of typical disease symptoms being reported as present (i.e., headache, sleep disruption, irritable bowel symptoms, subjective soft tissue swelling, and paresthesias) remained relatively constant over time, except for a reduced likelihood of reporting widespread pain over years since baseline (b = −.57 ± .22, t(91) = −2.53, p = .01). Treatment recommendations made by rheumatologists at baseline (e.g., physical therapy, counseling, biofeedback, medications) did not significantly change over time.Conclusion:Children with JPFS exhibit worsening pain and quality of life over time regardless of treatment modality recommendations or patient compliance to therapy. Patients returning for follow‐up visits may be those whose symptoms are most refractory. Additional studies are needed to identify barriers to improvement in this patient population and to determine effective treatment approaches to improve health outcomes.