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


This project was reviewed by the Institutional Review Board Committee at Johns Hopkins and Kaiser Permanente and was determined to be exempt as a quality improvement project.


Currently, a validated instrument has not been reported in the literature for use with JFS. An evidence-based screening tool was developed and designated the SORE Scoresheet (Figure 1). The SORE Scoresheet includes four categories of JFS symptoms, using the diagnostic criteria of Yunus and Masi (1985). The original criteria were evaluated in a study by Yunus, Masi, and Aldag (1989), with a sensitivity of 89% and a specificity of greater than 90%. Permission was obtained from Dr. Yunus to adapt the criteria as the basis for the SORE Scoresheet. Patients who have chronic pain and meet three out of eight criteria in two categories on the Scoresheet, including pain for 3 months or longer, were referred to a rheumatology clinic for further definitive diagnosis and treatment. An overall score was also calculated. Each symptom on the SORE Scoresheet was assigned one point, and the total number of symptoms identified was totaled, for a score between 0–14. Overall scores could then be compared for accuracy of JFS identification.

Figure 1.

SORE Scoresheet. This figure appears in color online at www.jpedhc.org.

The SORE Scoresheet was printed on colored paper, and a specific color was assigned to each module in the pediatric clinic and the outlying pediatric clinics for identification of the source of the Scoresheet. A laminated SORE Scorecard also was developed to assist the pediatricians in identifying the 18 tender points (Figure 2). SORE Scoresheets were provided on a clipboard in each module, and additional SORE Scorecards were available in a container in each module, if needed.

Figure 2.

A, SORE Scoresheet (front). B, SORE Scoresheet (back). This figure appears in color online at www.jpedhc.org.

Project Design

The problem addressed in this project was a delay in the recognition of JFS by pediatric primary care providers in patients between the ages of 10 and 18 years who are seen in the pediatric clinic.

The project had five aims, which included (a) development of a tool for use in the clinical setting for JFS recognition; (b) preparation and presentation of an education program for the pediatric care providers (physicians, nurse practitioners, and residents) to improve recognition of JFS using the JFS tool; (c) planning and delivery of an orientation program about the JFS tool for the pediatric clinic nursing staff; (d) implementation of the JFS tool in the pediatric clinical setting and evaluation of the impact on JFS recognition and referral; and (e) evaluation of provider satisfaction with the use of the JFS tool. Completing these aims included an educational session with the pediatric primary care providers.

A pilot project was conducted before the SORE Scoresheet was used in the overall project. Two nurse practitioners used the SORE Scoresheet to evaluate five patients who reported having chronic pain, and their results were compared with those of the pediatric rheumatologist.

An educational program was presented in two sessions to the pediatric care providers in August 2011 before the start of the project. The educational sessions were provided to familiarize the pediatric providers with JFS, evaluate their attitudes toward pediatric pain, and introduce use of the SORE Scoresheet. A 12-question true and false assessment examining attitudes about childhood pain was administered before the educational session began, and the correct answers were discussed during the presentation. A case study was also used during the educational session. A test was administered after the presentation to assess comprehension of the objectives.

The pediatric clinic nursing staff was oriented to the SORE Scoresheet via a written module that described the incidence of JFS, how JFS could affect the patient, and how to use the SORE Scoresheet. After reviewing the module, the staff returned a statement of module completion. All of the pediatric staff completed the orientation module.

The project was implemented at Kaiser Permanente in Fontana, California. The pediatric clinic is staffed by 15 pediatricians and five nurse practitioners. Fifteen family practice residents also rotate through the pediatric clinic at various times and were included in the education and project implementation. The eight outlying pediatric clinics, with a total of 20 pediatric providers, also were included in the project and also received the SORE Scoresheets and SORE Scorecards.

The project was implemented from September of 2011 through the end of January of 2012. The population included in this project was children from age 10 to 18 years who had appointments in the primary pediatric clinic to see a provider with a complaint of pain for 3 months or longer. Children younger than 10 years or older than 18 years or reported acute pain due to an illness or injury were excluded from the project.

When a child or adolescent with chronic pain was identified in the pediatric clinic, a SORE Scoresheet was completed. No informed consent was required for this project, because use of the screening tool was integrated into the routine history section of the pediatric appointment of all patients with chronic pain. If the criteria for referral were met, the patient was then referred to a pediatric rheumatologist. The rheumatologist completed the evaluation of the child within a 2- to 3-week period to determine if the child had a diagnosis of JFS, and the SORE Score sheet was completed for this visit for comparison. Demographics of the patients were collected by a chart review.

A provider satisfaction survey was administered at the end of the project to determine overall provider satisfaction with use of the SORE Scoresheet.

Data Collection

Data for a sample of children from the same period in 2010 were collected for use as a historical control group. A computer analysis of children between the ages of 10 to 18 years with a diagnosis of myalgia or fibromyalgia seen between September 2010 and January 2011 was obtained. Charts for 223 children were reviewed. Nine children met the criteria of being diagnosed with JFS by the pediatric rheumatologist during this period and became the comparison group for the project.

Twenty-five SORE Scoresheets were used for evaluation of children for JFS between September 2011 and January 2012. Three children with SORE Scoresheets were deleted from the project. Two children were not included because they were 5 and 8 years of age and thus were too young for the project. One child was not included because the mother of the child decided she did not want an appointment with the rheumatologist even though the score on the SORE Scoresheet indicated the need for a referral, and thus no rheumatology visit was available for comparison. Twenty-two SORE Scoresheets remained for analysis.

Data Analysis

Data were recorded and analyzed with use of the SPSS software version 18.0 for Windows. Demographic data were analyzed as means, standard deviations, and frequency distributions. Independent t tests were used to analyze the differences between the 2010 and 2011 patients for the number of visits in the previous year and the number of weeks required before referral. A correlation between total scores by the pediatric care providers and the pediatric rheumatologist was analyzed. The percentage of change in the number of referrals and matching of identified symptoms between the pediatric rheumatologist and the pediatric providers also was analyzed. The educational session evaluation tool results were also analyzed by percentage.

This sample of patients is small, with 9 patients in the 2010 sample and 22 patients in the 2011 sample. A power analysis was attempted with use of proportions at the http://www.stat.uiowa.edu/~rlenth/Power/ and http://statpages.org/proppowr.html Web sites. Neither of these sites calculated a sample size with power. With these samples, it has been determined that the study will not be powered to detect significant differences because of the small size.

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