This is the first case-controlled study of a reasonably large group of clinically referred JPFS patients, and consisted of a follow-up of longer duration and excellent retention compared with past studies. Results compellingly show that the majority of adolescent patients with JPFS are likely to continue to experience symptoms of FM even after 3–4 years. Specifically, results indicated that JPFS patients reported significantly more widespread pain, fatigue, headaches and sleep difficulties than healthy controls in late adolescence and early adulthood. About 60% of the JPFS group continued to meet all of the cardinal features of FMS and only a minority of them (<20%) were symptom free at follow-up. The findings are similar to earlier follow-up studies in clinical FM populations [5
], but stand in contrast to the more favourable prognosis for non-treatment-seeking children with JPFS symptoms [2
] who may have less refractory symptoms.
Over 70% of the JPFS participants were currently taking at least one medication for FM or associated symptoms and about one-third were in psychotherapy. Treatments received were focused primarily on pharmacotherapy and psychotherapy. Engagement with physical therapy was minimal despite recommendations to increase exercise. The continuing problems with pain and other symptoms after 3–4 years suggest that current treatments for management of juvenile FM are sub-optimal and more work is needed to develop effective interventions. Structured exercise programmes with greater attention to adherence to recommendations is a promising area for future study, particularly in light of findings from an early study suggesting that JPFS patients with an active exercise programme tend to have more positive outcomes [26
In our previously published study of the same cohort in their early adolescent years, JPFS patients had significantly greater anxiety and depressive symptoms compared with healthy controls by their parents’ report [8
]. At this follow-up assessment, anxiety and depressive symptoms continued to be significantly elevated, and about one-third of the JPFS group was currently receiving psychotherapy. These findings indicate a need for greater attention to mental health care for those JPFS patients who show early signs of comorbid anxiety or depression. Impairments in physical and emotional functioning might also begin to have an impact on pursuit of life goals at this age, as indicated by the findings that youths with JPFS were less likely to be in college than matched healthy controls.
This study provides a first look at children and adolescents with juvenile FM as they begin to enter the early adult years; however, results can be generalized only to those adolescents with JPFS who seek subspecialty care and may represent those with more severe symptoms. Furthermore, the sample size was not large enough to examine within-group differences in the JPFS group. Additional longitudinal studies with large enough sample sizes to assess within-group differences are necessary to examine trajectories of children and adolescents with JPFS during their transition from late adolescence into young adulthood. Also, this study relied solely on the reports made by the participants themselves and did not utilize physical examination; therefore, confirmation of FM classification by a clinician was not possible.
In summary, many adolescents and young adults with a history of JPFS continue to experience symptoms of widespread pain, difficulty sleeping, fatigue and other associated features of FM. Despite a poor prognosis for many patients, several patients improved significantly and did not report any continuing symptoms of FM or related impairment. More research into the variability of outcomes within the JPFS group, with closer examination of risk and protective factors associated with future outcomes is essential to designing focused interventions. Given the limited benefits of current treatment approaches, the evidence for promising treatments such as structured exercise programmes and cognitive–behavioural therapy should be tested to improve long-term outcomes.