Inflammatory bowel disease (IBD) is a condition characterized by chronic inflammation of the gastrointestinal (GI) tract that affects approximately 71 of every 100,000 children (Kappelman, Rifas-Shiman, Kleinman, et al., 2007). It is generally divided into two subtypes, Crohn’s disease (CD) and ulcerative colitis (UC), which differ in anatomical location and the nature of the inflammation. For cases in which the presentation is not clearly classifiable as CD or UC, the designation of indeterminate colitis is used. Approximately 20–30% of individuals with IBD are diagnosed in childhood (Hanauer, 2006
). IBD has a relapsing and remitting course, and the most common symptoms in children include frequent diarrhea, abdominal pain, and weight loss or growth delay. Associated symptoms can include fatigue, decreased appetite, fever, perianal disease, arthritis, and delayed puberty. IBD differs from functional GI disorders such as irritable bowel syndrome and recurrent abdominal pain in that the functional disorders are not associated with any known structural or biochemical abnormalities. There is no cure for IBD, so the focus of treatment is on controlling the inflammation that causes the symptoms. Corticosteroids are frequently used, and they often have negative side effects such as weight gain, acne, hair growth, irritability, depression, emotional lability, and sleep difficulty. Surgical intervention is another possible course of treatment. More than a third of people with childhood-onset IBD will require surgery within 20 years of diagnosis (Langholz, Munkholm, Krasilnikoff, & Binder, 1997
IBD presents many potential challenges to psychosocial adjustment. It is an unpredictable and potentially embarrassing disease. Youth with IBD may be embarrassed about their symptoms and frequent visits to the bathroom. They may fear being the target of the “bathroom humor” that is popular among children. They may limit their social activities to those with a bathroom nearby, or they may unexpectedly cancel planned activities due to disease flares. Short stature and delayed puberty can also contribute to appearing and feeling different from peers.
The psychosocial adjustment of youth with IBD has been investigated in multiple studies and summarized in a few review articles, most recently by Mackner and Crandall (2007
). As reported in that review, both specific symptoms of behavioral/emotional functioning and elevated rates of psychological disorders have been reported. Studies of specific symptoms have used measures that cover a range of symptoms such as the Child Behavior Checklist (CBCL; Achenbach & Rescola, 2001
), as well as those that target narrower areas of functioning, primarily depression and anxiety symptoms. Among studies employing a broad measure such as the CBCL that also included a comparison group, all but one study reported that children with IBD had significantly more behavioral/emotional symptoms overall and/or more internalizing symptoms than healthy children. There were few differences between children with IBD and children with other chronic illnesses (Mackner & Crandall, 2007
). When examining measures of specific symptom areas, significant differences in anxiety symptoms have not been found when children with IBD were compared to healthy children or another chronic illness group. Only one study reported that children with IBD had significantly more depression symptoms than healthy children. Furthermore, among all of the studies using the CBCL and measures of specific symptoms that provided normative scores, all of the mean scores were within the average range.
The rates of psychiatric disorders that have been reported range considerably, from 10% to 73% (Burke et al., 1989
; Szajnberg, Krall, Davis, Treem, & Hyams, 1993
), with studies using smaller samples and less reliable methodology reporting higher rates (Mackner & Crandall, 2007
). Among the studies using samples larger than 20 participants and methodology such as interviewer reliability checks, rates of current depression diagnosis ranged from 10% to 25%. Lifetime prevalence of a depressive disorder was significantly higher in a sample of children with IBD than children with cystic fibrosis in one study (25% vs. 12%; Burke et al., 1989
). This study also examined lifetime and current rates of anxiety disorders and found no significant differences between the IBD and cystic fibrosis groups. Thus, findings differ based on methodology. Studies using measures such as the CBCL have reported that children with IBD have significantly higher total scores and/or higher internalizing scores than healthy children, but studies using measures of specific symptoms areas such as depression symptoms have not typically found significant differences. However, studies of diagnoses such as depressive diagnoses suggest that they are higher in children with IBD than healthy children. Conclusions regarding the behavioral/emotional adjustment of youth with IBD remain unclear.
Research in the area of self-esteem has also been equivocal. Mackner and Crandall (2007
) reported that two of three studies employing healthy comparison groups found that youth with IBD have significantly lower self-esteem, but studies comparing youth with IBD to normative data have reported mean scores in the average range. In the area of social functioning, results appear to be dependent on the rater: there are few differences between children with IBD and healthy children according to child report, but typically significant differences are reported when parents provide information (DeBoer, Martha Grootenhuis, Derkx & Last, 2005
; Engstrom, 1992
; Mackner & Crandall, 2005
, 2006; Raymer, Weininger & Hamilton, 1984
; Youssef, Murphy, Langseder & Rosh, 2006
Only two studies in the area of social functioning have been included in reviews of the literature, and the results were conflicting. Research in the area of quality of life (QOL) in pediatric IBD has not been reviewed since 2004. Qualitative and descriptive studies were primarily reviewed then (Mackner, Sisson, & Crandall, 2004
), and at least six additional studies have been published in this area since this review. Several of the newer studies compared the QOL of children with IBD to healthy children and reported significantly lower QOL in the children with IBD, although not all areas of QOL were consistently significantly lower (Cunningham, Drotar, Palermo, McGowan & Arendt, 2007
; DeBoer et al., 2005
; Loonen, Grootenhuis, Last, Koopman & Derkx, 2002
To summarize, while IBD certainly has the potential to affect psychosocial functioning, the current state of the literature limits conclusions about the adjustment of youth with IBD. Conflicting results have been reported, and some areas of adjustment have not been summarized recently despite additional publications in these areas. The goal of this study is to review empirically research on the psychosocial adjustment of youth with IBD using meta-analytic techniques, with a focus on examining differences in the adjustment of youth with IBD in comparison to healthy youth as well as youth with other chronic medical conditions. We were particularly interested in documenting adjustment in specific psychosocial domains, including anxiety symptoms, depressive symptoms, internalizing symptoms, externalizing symptoms, QOL, social functioning, and self-esteem, as well as the presence of several psychiatric disorders. An improved understanding of the adjustment of youth with IBD in specific domains has the potential to identify precise, rather than global areas of psychosocial risk, thereby informing targeted intervention efforts.