Juvenile Fibromyalgia Syndrome and Improved Recognition by Pediatric Primary Care Providers

Judith D. McLeod, DNP, RN, CPNP


J Pediatr Health Care. 2014;28(2):e9-e18. 

In This Article


Pediatric care providers have many patients to see in a short time frame, and tools for identification of problems in the pediatric population can be very helpful. JFS is not well recognized in the pediatric setting, and having an available screening tool can increase referral to the pediatric rheumatologist for a definitive diagnosis and treatment. During this project, the SORE Scoresheet was used to identify patients with chronic pain who needed a referral. Use of the SORE Scoresheet has led to earlier identification of JFS. More prompt treatment may lead to improved outcomes, including less pain, less depression, and better treatment response. Having the SORE Scoresheet completed by the licensed vocational nurses or the family before the visit (except for the tender point examination) would help facilitate discussion of the problem and save provider time during the visit.

The finding for the number of visits in the year before referral and the number of weeks to referral showed clinically significant results for this population. Reducing the number of visits from nine to four would result in a cost savings to families of $120 to $160 in co-pays, as well as a reduction in the cost of laboratory tests or radiographs of $100 to $120 per patient. In the managed care setting, the patient with JFS could save an additional $500 to $600 in the costs of being appropriately diagnosed. Cost savings would be achieved by decreasing unnecessary laboratory work or radiographs and a decrease in unnecessary visits to providers other than the rheumatologist (Berger et al., 2007). In addition, the costs of using medication or therapies that are not effective could save as much as $500 over the course of 9 to 12 months (Annemans et al., 2008). The decreased number of visits would also allow pediatric providers to see more patients with other illnesses in the slots made available. Decreasing the number of weeks to referral also may increase patient and family satisfaction with care (Kashikar-Zuck, Parkins, et al., 2010). Families become frustrated the problem is not identified, and referral for JFS could reduce this frustration. Provider satisfaction also could be increased because providers would be able to refer the patient sooner for diagnosis and treatment.

Provision of an educational session about JFS before use of the SORE Scoresheet helped to improve recognition of JFS in the clinic and increased awareness of the problem. The development and presentation of an educational session helped pediatric providers recognize their attitudes toward patients with pain and learn to use the screening tool effectively.

Provider satisfaction with the SORE Scoresheet in this clinical setting was positive overall. It was important that the screening tool for JFS identification be quick and easy to use so pediatric providers could utilize the SORE Scoresheet during the visit with a minimal disruption or increase in visit time. Most providers believed that the Scoresheet was easy to use, and 95% would use it if a patient who had chronic pain for 3 months or longer was scheduled with them in the future.


The JFS sample in this project was small, with 22 patients identified during the project and a sample of nine patients from 2010 for comparison. Although the results were clinically significant for this population, the results cannot be generalized to a wider population of patients with JFS. A project with more clinical sites within Kaiser Permanente could produce a larger sample with more generalizable statistical results.

Many patients with JFS have a problem with chronic abdominal pain. Providers may or may not classify this abdominal pain as IBS. Additional questioning about the pain may help with the classification, but some providers do not ask the additional questions. It was noted in this project that twice as many patients were identified with IBS by the rheumatologist as by the pediatric care providers, which may indicate that the category for IBS needed to be changed to chronic abdominal pain or IBS for better identification of the patient's symptoms.

Some patients who are identified for referral for JFS via the SORE Scoresheet may not have JFS but may have another chronic pain problem. During this project, 86% (19) of the patients identified with the SORE Scoresheet had JFS, and the other three patients were identified as having chronic pain. Two patients had joint hypermobility that can cause chronic pain. JFS develops in some of these patients later. The other patient was referred to orthopedics for treatment for spondylolysis. Patients referred to rheumatology for chronic pain receive treatment and follow-up by the rheumatologist for chronic pain, even without the JFS diagnosis.

It is possible that the Hawthorne Effect influenced this project. Fernald, Coombs, DeAlleaume, West, and Parnes (2012) note that studies in real-world settings may be affected by the Hawthorne Effect because the subjects know they are participating in a study or are receiving additional attention. Although some of the providers and staff had contact with the practitioner managing the project, participants in the outlying clinics did not have such contact, and referrals were made equally from all sites. A longer project timeline or use of several sites for a project would decrease the possibly of the Hawthorne Effect and would provide a larger sample size.

This sample had an 86% positive predictive value. Use of the SORE Scoresheet with a larger sample of patients at more clinical sites will help establish sensitivity and specificity and discriminate validity of the screening tool for further use in a wider population of patients with chronic pain.

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