Health-related QOL is the subjective perception of the impact of a chronic medical condition on physical, psychological, and social well-being [22]. Disease-specific and generic measures are available to assess QOL [23]. Studies using generic measures have found that that youth with IBD have lower QOL than healthy youth [16, 24–28], and a meta-analysis provided further support for this finding [16]. Although differences exist, the QOL of youth with IBD is generally high, and relatively few youth with IBD experience clinically significant impairments in QOL [16]. QOL in pediatric IBD is also comparable to that of youth with other chronic and acute conditions [16, 25, 26].

Worse disease activity is associated with poorer QOL as assessed with both disease-specific [24, 29–31] and generic measures [25]. Additionally, worse disease activity predicts poorer QOL 1 year after diagnosis [29]. Fatigue is an independent predictor of disease-specific QOL even when accounting for disease activity [26]. Conflicting evidence exists regarding the relationship between corticosteroid use and QOL, with one study finding lower QOL among youth prescribed steroids [27] and another study finding no relationship [29]. Similarly, no differences in QOL have been documented between youth on aminosalicylates, immunomodulators, or anti-TNF α therapy [26].

Regarding demographic factors, older age was associated with lower disease-specific QOL in one study [29]. Research on gender is mixed, with one study suggesting poorer QOL among males [28] and another suggesting poorer QOL among females with IBD [30]. In one study, adolescents with Crohn disease reported worse QOL than those with UC [31].

Using less adaptive coping strategies (e.g., avoidance) has been associated with worse QOL, whereas higher levels of predictive control (i.e., confidence in one’s ability to control situations in the future) and social support have been associated with better QOL in pediatric IBD samples [30, 32]. Similarly, family dysfunction in problem solving, communication, and general functioning have been associated with worse disease-specific QOL among adolescents with IBD [31].

IBD has the potential to significantly disrupt social functioning, particularly involvement in social activities such as spending the night with a friend, hanging out at the mall, and participating in many sports. Belonging to a particular social group becomes very important during adolescence, and acceptance by peers is an important part of adolescent self-identity [33, 34].

Social functioning has been categorized into the domains of social skills, social behavior, and social adjustment [35]. Social skills are the individual abilities or characteristics needed to behave competently in social settings. Social behavior refers to actual behaviors in social interactions, and social adjustment encompasses the quality of adolescent’s relationships [36, 37]. In a meta-analysis of eight studies examining social behavior/adjustment, youth with IBD reported significantly worse social functioning than healthy children but similar functioning compared to children with other chronic illnesses [16]. Children with IBD have also been found to have fewer close friends and to have participated in fewer organized activities than healthy children [7]. Mean scores for social functioning typically fall in the Average range, and rates of clinically significant problems in social behavior/adjustment range from 2 to 22% [6, 7]. In one study investigating social skills, there was no significant difference between healthy children and those with IBD [38].

A few studies have identified factors that put youth with IBD at increased risk for social difficulty. Boys with IBD have more social difficulty than girls with IBD or healthy youth, including social problems that reach clinical significance. Twenty-nine percent of boys with IBD have clinically significant social difficulty compared to girls with IBD (11%) or healthy boys (0%) or girls (5%) [38]. Onset of IBD during adolescence is also associated with worse social functioning: 35% of those diagnosed in adolescence have clinically significant social difficulty compared to 5% for childhood onset [7].

Having a child with a chronic illness affects the whole family, so family functioning and the behavioral/emotional functioning of parents and siblings have been investigated in families with a child with IBD. Mixed results have been reported when examining overall family functioning in those with a child with IBD compared to healthy families [7, 14]. Typically, families report healthy levels of family functioning, but many endorse clinically elevated family dysfunction with communication, family roles/responsibilities, and the degree to which family members are involved in one another’s lives [31]. This pattern might reflect the course of IBD (i.e., remission and flare-ups) and its impact on family life: The demands of IBD may challenge families’ ability to communicate with one another, and family roles/responsibilities may change to accommodate disease flares (e.g., one caregiver stays with ill child in hospital, while other caregiver cares for healthy children and household tasks). In fact, ­family dysfunction has been significantly related to more severe disease, increased pain/fatigue, more bowel movements, and a greater number of behavioral/emotional symptoms [39–41].

Parental functioning can also play a role in the child’s psychological adjustment. Rates of depression in mothers of children with IBD were similar to mothers of children with CF (10% current diagnosis; 51% lifetime history) [42]. A small study examining specific symptoms found that mothers of children with IBD reported significantly more behavioral/emotional symptoms than mothers of healthy children [14], but T scores were not reported, which limits conclusions about clinical significance. Parents of youth with IBD also report significantly lower perceived social support, an important coping strategy, than parents of healthy children, an important coping strategy [43]. Poorer psychosocial functioning among mothers of adolescents with IBD has been linked to adolescent depressive symptoms, negative health outcomes, and IBD-related functional disability in daily activities (i.e., school, extracurricular activities) [40]. Parenting stress has been linked with poorer quality of life in youth with IBD.

Finally, one study investigated behavioral and emotional functioning in healthy siblings of children with IBD. Siblings of children with Crohn disease scored significantly above the normative mean on a questionnaire, whereas the mean score of siblings of children with ulcerative colitis fell at the normative mean. No siblings of healthy children were included [44].

In the area of body image, concerns about poor growth and appearance have been cited frequently in QOL studies [45–49], although QOL measures are not validated specifically for assessing body image, and comparison groups were not included. Using a normed questionnaire assessing self-esteem about physical appearance, one study found mean T scores in the Average range and no significant differences between children with IBD and healthy children [6].

Six studies have investigated general self-esteem among children with IBD. Both studies utilizing normed questionnaires reported mean T scores in the Average range [5, 6]. The studies with comparison groups reported mixed results [6, 13, 14, 27, 50]. A meta-analysis reported that the self-esteem of youth with IBD was not significantly different from that of healthy youth or children with other chronic illnesses [16].

Although stressful life events and coping strategies have been studied among adults with IBD [51], these areas have received little attention in pediatric IBD. In a review of the adult literature, it was concluded that both stressful life events and daily hassles are associated with symptom exacerbation although this remains controversial. Among adults, problem-solving coping strategies and social support are associated with lowered psychological distress and better health outcomes. Avoidant coping strategies and lower perceived personal control are associated with poorer health status.

Surprisingly, children with IBD have reported significantly fewer stressful life events than healthy children [52]. Two studies reported that children with IBD use less effective coping strategies, such as avoidant coping strategies [30, 52], but another study found no differences in the coping strategies or social support of healthy children and those with IBD [6]. In addition, coping involving a more passive, depressive style was associated with worse quality of life in adolescents with IBD compared to using a more positive, active coping style [30]. Finally, a small study reported that children with IBD were significantly more likely to have an external locus of control (i.e., believing events are out of your control rather than affected by your efforts) than healthy children, and having a stronger external locus of control was associated with worse disease severity [53].

School functioning, which includes academic performance, school attendance, educational attainment, and psychosocial functioning in the school context, is an important area of psychosocial functioning for children and a potential area of concern for children with IBD. While research on school functioning exists in pediatric IBD, many studies are limited by methodological issues such as relying on self-report of absences and academic achievement rather than school records.

Most youth with IBD feel that their condition has adversely affected their academic performance or educational attainment [54–56]. However, objective data suggest similar levels of academic performance and educational attainment of youth with IBD compared to the general population or healthy controls when using self-report [57–59] or school records [60].

Some evidence for impairments in school attendance among youth with IBD exists. In two studies, children with IBD reported absences of 12–13 weeks during a school year [54, 61]. A study using school records and a healthy comparison group found that youth with IBD had significantly more absences, an average of 12 school days [60]. Excessive school absences in the absence of active disease may reflect anxiety-based school avoidance, but this has not been studied in pediatric IBD.

Psychosocial functioning in the school context can be assessed via QOL measures. In two studies of youth with IBD, school-related QOL received the lowest subscale score on the child-report PedsQL [25, 62, 63], suggesting that school functioning is a concern. In one study, children with IBD reported significantly worse school QOL than normative samples of chronic illness, acute illness, and healthy comparison groups [25]. However, in a large study investigating eight chronic illness groups, children with IBD did not have significantly different school QOL [63], and their school-related QOL was not significantly different from that of healthy youth in another study [60].

Two studies have examined risk factors for difficulties in school functioning for children with IBD. Disease factors were not significantly associated with school QOL in two studies [25, 60], nor with absence or grade point average. However, demographic and psychosocial factors such as internalizing symptoms were significant predictors of achievement and attendance [60].