Juvenile primary fibromyalgia syndrome (JPFS) is a poorly understood pediatric chronic pain condition affecting primarily girls and is typically first diagnosed in the adolescent years (Yunus & Masi, 1985
). The cardinal symptoms of JPFS include widespread musculoskeletal pain of greater than 3 months duration, multiple painful tender points, disrupted sleep, chronic fatigue, and other associated features such as irritable bowel symptoms, lightheadedness/syncope, anxiety, and recurrent headaches. Previous research indicates that chronic pain in children has a negative impact on multiple domains of functioning, including the developmentally critical area of school functioning (Gauntlett-Gilbert & Eccleston, 2007
; Konijnenberg et al., 2005
; Logan, Simons, Stein, & Chastain, 2008
; Vetter, 2008
). Within the broader domain of school functioning, difficulty with school attendance is an area that deserves special attention. Attending school is a key developmental expectation in the adolescent years, and longitudinal studies have shown that increased school absenteeism is a risk factor for school drop-out and multiple economic, marital, social, and psychiatric problems in adulthood (Kearney, 2008
Patients with JPFS may be particularly vulnerable to school absenteeism because of their unremitting widespread pain, disrupted sleep, and chronic fatigue. At least two prior studies have indicated that school absenteeism might be a significant problem for patients with JPFS. Reid, Lang, & McGrath (1997
) found that adolescents with JPFS missed an average of 22.6 (SD
= 16.63) days of school in an academic year and Kashikar-Zuck, Vaught, Goldschneider, Graham, & Miller (2002
) found that adolescents with JPFS reported missing 5.23 days (SD
= 7.76; range = 0-–30) in the last 30 days of school. Both these studies had relatively small sizes (<20 JPFS patients in each study) and a high level of variability in school absences, so it is not clear whether this level of absenteeism is commonly seen in adolescents with JPFS and why some adolescents attend school regularly despite their symptoms, while others miss a great deal of school. Despite anecdotal reports by parents of children seen in chronic pain clinics that their child is missing school due to the severity of their pain, research has shown that pain characteristics (including pain intensity and pain duration) are not significantly related to school functioning (Eccleston, Crombez, Scotford, Clinch, & Connell, 2004
; Kashikar-Zuck et al., 2002
; Logan & Curran, 2005
) but that patient-related psychosocial factors and parent factors may in fact play a more important role.
Of the patient-related psychosocial factors, depressive symptoms are the most well-studied in pediatric chronic pain. Higher levels of depressive symptoms are consistently found to be related to overall functional disability (Gauntlett-Gilbert & Eccleston, 2007
; Kashikar-Zuck et al., 2002
; Logan et al., 2008
; Reid et al., 1997
) and Logan et al. (2008
) found that depressive symptoms were significantly associated with impairment in many domains of school functioning, including school attendance. In a recent publication, it was observed that anxiety and attentional disorders are also relatively common psychiatric conditions in JPFS patients (Kashikar-Zuck et al., 2008b
) but their association with school absenteeism is unknown. Anxiety and behavioral disorders are common psychiatric reasons for school absenteeism in children (Kearney, 2008
) but their role in children with chronic pain have not been well studied.
Another potential psychosocial factor that may be associated with higher disability in pediatric pain patients is a parental history of chronic pain (Jamison & Walker, 1992
; Kashikar-Zuck et al., 2008a
; Lynch, Kashikar-Zuck, Goldschneider, & Jones, 2006
; Schanberg, 2001
; Schanberg, Keefe, Lefebvre, Kredich, & Gil, 1998
). Maternal history of chronic pain, in particular, is commonly reported in adolescents with JPFS and a higher number of pain conditions reported by mothers was found to be associated with greater functional impairment among the adolescents (Kashikar-Zuck et al., 2008a
). A family environment in which one or more parents suffer from chronic pain is thought to confer a risk for greater disability in the child in part due to social learning influences such as parent modeling of pain behavior or pain coping. For example, adolescents with JPFS who observe a parent being disabled from pain and staying home from work may have a greater likelihood of missing or avoiding school when they experience pain themselves. School absences have not been specifically examined in the context of parental pain history. Further research is warranted to better understand the potential role of the psychological factors mentioned above (such as depressive symptoms, presence of co-morbid psychiatric diagnosis) or parental pain history, in explaining the significant problem of school absenteeism in JPFS.
Studies on school functioning in pediatric chronic pain have typically utilized school absences as one of the primary indicators of impairment. However, an additional indicator of school disability that has not been adequately studied is whether or not the child is able to attend regular (full-time) school. High rates of homeschooling were documented in one study of children with chronic pain (Vetter, 2008
), and in a clinical setting, several adolescents with JPFS anecdotally report being homeschooled due to their medical condition. This might include being enrolled in a formal homeschooling program, online or virtual schooling or a home-bound instruction program. Parents of these homeschooled patients typically cite the child’s pain or fatigue as the reason that they are unable to handle regular school hours. They also mention conflicts with school authorities about appropriate accommodations for the child’s disability as a reason for homeschooling. A limitation of many of the studies thus far is that they excluded participants who were homeschooled (Mikkelsson, Salminen, & Kautiainen, 1997
; Shapiro et al., 1995
; Sturge, Garralda, Boissin, Dore, & Woo, 1997
) or did not separately describe this subgroup. Therefore, little is known about the clinical and psychosocial characteristics of patients who elect to be homeschooled.
The objectives of this study were to address gaps in the literature by (1) describing school absences and homeschooling rates in children and adolescents with JPFS, (2) examining whether pain intensity, depressive symptoms and maternal pain history were associated with school absenteeism, (3) examining whether school absences significantly differed among patients with or without a diagnosis of an anxiety, depressive, or attentional disorder, and (4) describing the subset of JPFS patients who are homeschooled with respect to their pain intensity, depressive symptoms, and maternal pain history. Based upon past studies, it was anticipated that pain intensity would not be significantly associated with school absences in children and adolescents with JPFS. However, it was hypothesized that depressive symptoms and maternal history of chronic pain would be significantly associated with school absences. It was also expected that children and adolescents with JPFS who had a co-morbid psychiatric diagnosis would have significantly more school absences than those without. Given the lack of prior work in homeschooled pain patients, no specific hypotheses were made regarding characteristics of JPFS patients who were homeschooled versus those in regular school.