Treatment and outcomes of pediatric fibromyalgia: More than resolving pain
Fibromyalgia is one of the most common forms of amplified musculoskeletal pain in childhood, and is responsible for the largest number of new patient visits to pediatric rheumatology clinics. It is treatable, but the measure by which we gauge success needs to be rethought. The outcomes for pediatric fibromyalgia should consider three domains: pain, function, and mental health. Although we would like the pain to dissipate, it is more important for the child to function normally, and even more important that they enjoy good mental health. To that end, outcome measures need to consider all three domains.
Mental health risks in children with chronic amplified pain
A recent study of adolescents with chronic amplified pain, the majority (59%) of whom had fibromyalgia at diagnosis, found that passive suicidal ideation was reported in 20% of children, and 2% had suicidal intent . Thus, it is critical that we pay attention to the mental health concerns of these children to prevent suicides. Other mental health outcomes also need to be assessed including conversion symptoms, self-injury (cutting), disordered eating, other functional pain syndromes (abdominal or pelvic pain), depression, and anxiety.
Cognitive behavioral therapy
Kashikar-Zuck et al have undertaken several studies on the use of cognitive behavioral therapy (CBT) for the treatment of pediatric fibromyalgia. One study has shown a 37% improvement in the Functional Disability Inventory (FDI) scores in adolescents with fibromyalgia treated with CBT versus 12% improvement in the education treated group, although the pain scores between the two groups did not differ . However, another study by the same group found that CBT was not associated with increased physical activity, as measured by actigraphy . This group also studied the long-term outcomes of adolescents with juvenile-onset fibromyalgia and, at a mean of 6 years post diagnosis, more than 80% continued to have fibromyalgia symptoms and just over half fulfilled the American College of Rheumatology criteria for adult fibromyalgia .
While some studies have investigated the use of pharmacologic treatments in an attempt to manage the pain, a double blind, placebo-controlled trial of pregabalin versus placebo found no difference in the mean pain level at 15 weeks . Furthermore, there is a significant risk of over-medicalization in pediatric fibromyalgia .
An interdisciplinary approach
Taking a different approach, we treated 64 children with fibromyalgia with a very intense physical and occupational therapy program along with CBT and creative arts therapy . The therapy involves quite rigorous aerobics, strengthening, desensitization for those with allodynia, and focuses on the activities most difficult for the individual child. Medication for pain or sleep is stopped or tapered off, if need be. Other therapies such as acupuncture, chiropractic therapy, homeopathic therapy, vitamins, aromatherapy, and transcutaneous electrical nerve stimulation are stopped.
Regarding function, over the duration of the program (23 ± 13 days) the FDI score fell from 24 points to normal (7 points) at the end of the therapy program and this level was maintained over the year (5 points at 1-year follow-up) . Objective physical function, as measured by the Bruininks–Oseretsky Test of Motor Performance, Second Edition (BOT-2) and Bruce treadmill endurance test, showed remarkable improvement. The four BOT-2 domains, fine manual control, manual coordination, body coordination, strength and agility, and the total composite score improved significantly at the end of the therapy program and were maintained or continued to improve over the year. Endurance testing also showed marked improvement at the end of the program. This improvement decreased slightly by the end of the year; however, the subjects’ endurance at one year was at the 90th percentile for age. The fact that their endurance was so durable bespeaks normal physical functioning over the year.
Psychological outcomes were assessed using the Pain Stages of Change Questionnaire, adolescent version, which showed that precontemplation (no clear sense of responsibility for pain control or need to make behavioral change), contemplation (some awareness of responsibility for pain control and some need to make behavioral change), action (actively taking responsibility for pain control and making behavioral change), and maintenance (maintaining responsibility for pain control and maintaining behavioral change) all improved significantly by the end of the therapy program and this improvement was maintained over the year . On the Pediatric Quality of Life measures, the physical health summary score, psychosocial health summary score and emotional and social functioning were improved and continued to improve over the year. School function was not as improved at the end of the therapy program, however patients had not been attending school during the program, and by the end of the year, school function was dramatically improved.
The program also had a significant impact on pain level. We observed that the mean pain score fell from 71 out of 100 (clinic visit) and 66/100 (at baseline 3 months later, discounting regression to the mean), to 25/100 in 3 weeks and 20/100 at 1 year . Of these, 33% reported no pain and approximately half had a pain score of 10/100 or less.
In conclusion, pain should be only one measure of treatment success or failure of any treatment program for childhood fibromyalgia. Once the diagnosis is recognized, studies and testing need to stop as the risk of over-medicalization is high and leads to untoward effects, unnecessary costs and delay in treatment. Treatment should begin by concentrating on function and addressing any mental health concerns. Psychological outcomes are foremost, since curing fibromyalgia only to have the patient develop disordered eating, conversion, school avoidance or suicide ideation is not success. Likewise, function is what we can address with intensive physical and occupational therapy and that restores these children to school, sports, and other normal childhood activities. Therefore, normal function should be the initial focus of treatment. Almost as a byproduct, the pain decreases when treated with an intensive interdisciplinary team approach rather than with medications. We facilitate children with fibromyalgia to, in a sense, cure themselves with exercise and counseling. We need to get over the idea that we can treat them with medication alone.
- Lewcun B, Kennedy TM, Tress J et al. Predicting suicidal ideation in adolescents with chronic amplified pain: The roles of depression and pain duration. Psychol Serv 2018; 15: 309–315.
- Kashikar-Zuck S, Ting TV, Arnold LM et al. Cognitive behavioral therapy for the treatment of juvenile fibromyalgia: a multisite, single-blind, randomized, controlled clinical trial. Arthritis Rheum 2012; 64: 297–305.
- Kashikar-Zuck S, Flowers SR, Strotman D et al. Physical activity monitoring in adolescents with juvenile fibromyalgia: findings from a clinical trial of cognitive-behavioral therapy. Arthritis Care Res 2013; 65: 398–405.
- Kashikar-Zuck S, Cunningham N, Sil S et al. Long-term outcomes of adolescents with juvenile-onset fibromyalgia in early adulthood. Pediatrics 2014; 133: e592–600.
- Arnold LM, Schikler KN, Bateman L et al. Safety and efficacy of pregabalin in adolescents with fibromyalgia: a randomized, double-blind, placebo-controlled trial and a 6-month open-label extension study. Pediatr Rheumatol Online J 2016; 14: 46.
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- Sherry DD, Brake L, Tress JL et al. The Treatment of Juvenile Fibromyalgia with an Intensive Physical and Psychosocial Program. J Pediatr 2015; 167: 731–737.