Social Functioning and Peer Relationships of Adolescents with Juvenile Fibromyalgia Syndrome ( JPFS )
SUSMITA KASHIKAR-ZUCK, ANNE M. LYNCH, T. BRENT GRAHAM, NICOLE F. SWAIN, SARA M. MULLEN, AND ROBERT B. NOLL
To assess peer relationships of adolescents with Juvenile Primary Fibromyalgia Syndrome (JPFS) compared with matched classroom comparison peers (MCCPs) without a chronic illness. JPFS is characterized by chronic musculoskeletalpain, sleep disturbance, fatigue, and difficulty with daily functioning. Adolescents with JPFS often report problems with school and participating in peer activities, placing them at risk for social isolation from their peers and psychosocial adjustment problems.
Participants were 55 adolescents with JPFS (ages 12–18 years) from a pediatric outpatient rheumatology clinic and 55 MCCPs. Data on peer reputation and peer acceptance were collected from teachers, peers, and self report in a classroom setting with no focus on JPFS.
A dolescents with JPFS were perceived (by peer and self reports) as being more isolated and withdrawn and less popular. Adolescents with JPFS were less well liked, were selected less often as a best friend, and had fewer reciprocated friendships.
Our findings suggest that adolescents with JPFS are experiencing problems with peer relationships. Given the central role that peer relationships play in psychological development of children, and because peer rejection and isolation have been associated with subsequent adjustment problems, these findings are concerning. Longitudinal studies of adolescents with JPFS are needed to ascertain whether these patients are at long-term risk and will provide a foundation for the need for early interventions. Results are discussed within the context of earlier findings for other adolescents with chronic illness and rheumatic conditions, such as juvenile idiopathic arthritis, who demonstrated no social problems.
Fibromyalgia syndrome is a debilitating pain condition that occurs in 4% of adult women and 0.5% of adult men in the US. Adults with fibromyalgia often do not improve with treatment and experience significant social, emotional, and vocational disability (1–5). Fibromyalgia likely begins at an early age, and is increasingly being diagnosed in adolescents. Similar to adults, adolescents with juvenile primary fibromyalgia syndrome (JPFS) experience generalized musculoskeletal pain, multiple tender points upon palpation, sleep difficulties, and associated symptoms such as persistent fatigue, psychological distress, and irritable bowel syndrome (6). The overall incidence is not clear; however, adolescents with JPFS represent 7% of new patient diagnoses in rheumatology clinics (7). JPFS occurs more commonly in girls (6), and the age at onset is typically between 13 and 15 years. JPFS is often difficult to diagnose and treat because of the lack of objective diagnostic findings on laboratory tests, subjective nature of pain reports, poor response to conventional medical treatment, and high levels of distress expressed by patients.
Adolescents diagnosed with JPFS have unfortunately received relatively little attention in the research literature. Compared with adults, patients with JPFS face unique developmental and social challenges as they cope with daily pain and difficulties with daily activities. JPFS has been shown to compromise psychosocial functioning, evidenced by poor school attendance and increased emotional distress (8 –10). In one study, adolescents with JPFS were found to miss an average of 5 days of school per month, putting them at risk for academic difficulties, decreased social contact, and peer rejection (9).
With the lack of specific medical findings, adolescent patients and parents anecdotally report that it is difficult for them to explain to peers and school teachers why they often have problems engaging in everyday activities, participating in sports, and attending school regularly. This might serve to exacerbate the psychosocial impact of JPFS. In the clinical setting, school-related social difficulties are often mentioned by parents and adolescents as a significant concern. Parents often report chronic school absenteeism, social withdrawal, and few friends. Adolescents with JPFS often state that they are rejected because teachers and peers do not understand the nature of JPFS and believe they are merely seeking attention or avoiding academic obligations.
Current knowledge about social difficulties in JPFS has relied primarily on anecdotal reports or research studies using self-report or parent-report measures. No study to date has entered the school environment of adolescents with JPFS and evaluated actual peer relationships and social adjustment. This is especially significant within the context of considerable work demonstrating the central importance of peer relationships for normal social, emotional, and behavioral development of children, and indicating that peers are the preferred source of information about a child’s social functioning (11–14).
Peer relationships in school-age children have been shown to be a remarkably stable predictor of later psychosocial adjustment, and early disruption in these relationships is a risk factor for subsequent problems. Sophisticated research methodologies have been developed to assess social functioning of adolescents in the field of developmental psychopathology, but these methodologies have not been applied to the study of social functioning of adolescents with JPFS. Our research group has successfully developed a methodology of classroom-based peer assessment to assess the social functioning of children and adolescents with chronic illness using a case–control design (15–17); this well-established design was used in the current study of adolescents with JPFS.
In this design, information about peer reputation and peer acceptance for every student in aclassroom is gathered from peers, without revealing the identity of the target subject to the class or revealing the health focus of the study. The best-matched comparison peer for the target subject (based upon closest date of birth, same sex, and same race) is selected from the class to be the matched classroom comparison peer (MCCP) for the study. This strategy permits collection of data without stigmatizing the adolescent with JPFS or biasing peer responses.
Next, peer reputation and peer acceptance ratings for each adolescent are based on ratings from the entire class, increasing the robustness of measurement and decreasing subjectivity associated with self report or parent report. Finally, the matching procedure for selecting comparisons ensures that target status is not confounded with multiple social, economic, or cultural risk factors, and it does not have the limitations normally associated with a matching design (18).
The primary objective of this study was to evaluate whether adolescents with JPFS have more difficulties with peer relationships than MCCPs without a chronic illness. We hypothesized 1) that adolescents with JPFS would be described by peers, teachers, and self report as being more sensitive/isolated than MCCPs, and 2) that adolescents with JPFS would have fewer friends and be less well liked than MCCPs.
PATIENTS AND METHODS
This study was the first phase of a larger ongoing research program evaluating the social functioning of youth with chronic illness (16,17,19). Participants in this study were 55 adolescents with JPFS recruited from a pediatric rheumatology clinic and 55 MCCPs selected from the classroom of each target adolescent with JPFS.
Adolescents with JPFS.
To be eligible for participation, adolescents with JPFS had to be 12–18 years of age and be attending regular school (no full-time special education or full-time home-bound instruction). Diagnosis of JPFS was made by a pediatric rheumatologist and verified by chart review. The criteria were generalized musculoskeletal aching at 3 sites for 3 months in the absence of other underlying conditions; laboratory tests within normal limits (hemoglobin, thyroid function tests [free T4 and thyroid-stimulating hormone]); severe pain in 5 of 11 tender point sites; and at least 3 of the following criteria: fatigue, irritable bowel, poor sleep, chronic anxiety or tension chronic headaches, subjective soft tissue swelling, numbness, and pain modulation by weather factors or stress (6). Patients with other chronic rheumatic diseases were excluded. This study was carried out in compliance with current ethical standards for research with humans and was approved by the hospital institutional review board.