The diagnosis of inflammatory bowel disease (IBD) can be emotionally challenging for both children and parents. IBD involves unpleasant symptoms (e.g., diarrhea, abdominal pain) and treatment regimens that are complex and time-consuming (e.g., daily medication, surgical procedures). Disease symptoms and medication side effects can make IBD an embarrassing illness during childhood and adolescence and, consequently, psychosocial functioning and health-related quality of life (HRQOL) may be impaired. Indeed, research demonstrates that among children and adolescents with IBD, body image (e.g., short stature and weight gain), physical symptoms (e.g., diarrhea), and frequent visits to the bathroom are primary concerns [1
], and adolescents experience lower HRQOL in physical functioning, psychological functioning, and autonomy domains [4
]. While disease severity and level of parent stress have been identified as predictors of lower HRQOL in youth with other chronic conditions, there is very limited understanding of risk factors, other than disease severity, associated with poorer HRQOL in IBD. Since the focus of health care in pediatrics has shifted from concentrating predominantly on mortality and morbidity to a more comprehensive view that encompasses patient-reported physical functioning as well as psychosocial functioning [7
], HRQOL has become an important outcome variable for medical providers [8
]. It is therefore important to identify factors that contribute to poor HRQOL in adolescents with IBD.
Poor HRQOL among youth with chronic medical conditions has been linked to greater psychosocial and internalizing (i.e., emotional and mood difficulties such as anxiety and depression) problems. For example, among youth with epilepsy [9
], obesity [10
], asthma [11
], and diabetes [12
], depressive symptoms and psychosocial functioning have been identified as strong predictors of poor quality of life, suggesting that internalizing difficulties may be an important contributing factor to HRQOL. In children and adolescents with IBD, research has shown a tendency for this population to experience elevated rates of internalizing difficulties, particularly anxiety and depression, compared to otherwise healthy youth [13
]. While the etiology of depression in this population may have both a psychological (e.g., difficulties adjusting and/or coping with the chronic demands of IBD) and biological (e.g., inflammatory proteins) basis, recent research indicates that adolescents with IBD are 4.6 times more likely to experience significant symptoms of anxiety and depression compared to healthy adolescents [14
]. However, more current and population based data are needed to confirm this finding. Nevertheless, patient emotional distress may be an important factor to consider when assessing HRQOL among children and adolescents with IBD.
Similar to patients’ experience, parents of children and adolescents with IBD exhibit heightened levels of emotional distress and poorer functioning [15
]. Poor psychosocial functioning among mothers in youth with IBD has been correlated with greater adolescent depressive symptoms and more negative IBD health outcomes [16
], In a separate study, maternal functioning was related to poorer HRQOL in adolescents with IBD [17
]. Yet, no research has examined these variables together to determine underlying mechanisms through which they are related despite the theoretical underpinnings of the findings, which are congruent with Thompson’s Transactional Stress and Coping model [18
]. This model has been empirically tested in various pediatric populations, and posits that in the context of a child’s chronic medical condition, the parent’s own functioning plays a key role in the child’s psychological adjustment along with sociodemographic and illness parameters (e.g., diagnosis, prognosis), and child factors (e.g., cognitive appraisal). For example, Janicke et al. [19
] found that increased parent distress was associated with poorer child-reported HRQOL in a sample of overweight youth, and that this relationship was mediated by child depressive symptoms. Parent distress may similarly be a key factor in understanding HRQOL among youth with IBD.
It is clear that HRQOL among children and adolescents with IBD is an important outcome variable to consider. However, little is currently known about the psychosocial risk factors that contribute to low HRQOL in this population. Given the relationship between parent distress and adolescent HRQOL as well as research documenting elevated levels of internalizing difficulties in youth with IBD, it is plausible that adolescent HRQOL is impacted by both their own level of distress as well as their parents’. This study was designed to examine the link between parent distress, adolescent depressive symptoms, and adolescent HRQOL in a sample of adolescents with IBD. Specifically, the mediating role of youth depressive symptoms in the relationship between parent distress and youth HRQOL was tested. We hypothesized that child depressive symptoms would mediate the relationship between parent distress and HRQOL.