Increased Anxiety Observed in Parents of Adolescents with IBD


Parents in the active disease group indicated greater levels of anxiety than parents of children without active IBD, suggesting a correlation between parental mental health and their child’s disease activity.

Katsuhiro Arai, MD, PhD | Credit: APPSPGHAN

Katsuhiro Arai, MD, PhD


Parents of adolescents with inflammatory bowel disease (IBD) may experience greater levels of anxiety when their child’s IBD is active, according to findings from a recent longitudinal study.

Results highlighted increased levels of anxiety among parents of children with active IBD in surveys over the duration of the 1-year study period, also calling attention to large effects for quality of life and depression levels when these factors were paired among disease activity groups.1

“Parents may develop mental health or [quality of life] problems secondary to their children’s active disease because of increased parental burdens, such as increased hospital visits with their children and concerns about their health. However, whether active IBD in adolescents is regularly associated with changes in parents’ mental health and [quality of life] is not clear,” wrote investigators.1

IBD affects about 1.6 million people in the US, including 80,000 children and young adults. Although it is a lifelong condition, treatment such as medication management, diet modification, growth and development monitoring, surgical care, and psychological support may help patients achieve remission and reduce their symptoms.2

To assess the association between parent’s mental health and quality of life with their child’s disease activity, senior investigator Katsuhiro Arai, MD, PhD, of the Center for Pediatric Inflammatory Bowel Disease at the National Center for Child Health and Development in Japan, and a team of investigators administered surveys to adolescents with a confirmed diagnosis of IBD and their parents. Participants were recruited from a tertiary pediatric hospital in Japan between October 2017 and March 2020. Patients and their parents were excluded from the study if they could not read or answer questionnaires written in Japanese or had severe medical complications other than IBD.1

In total, 42 adolescents and their parents who met the inclusion criteria agreed to participate in the baseline survey. Investigators conducted secondary and follow-up surveys at 3 and 12 months, respectively. Only parents who completed the baseline and secondary surveys were included in the analysis.1

Investigators divided the cohort into 3 groups based on the presence or absence of active IBD. The active disease group included parents whose children had active disease during both surveys, based on the weighted Pediatric Crohn’s Disease Activity Index or the Pediatric Ulcerative Colitis Activity Index. The remission group included parents whose children’s IBD remained in remission during both surveys, while the improved group included parents whose children experienced active IBD at baseline but achieved remission during the second survey.1

At baseline, 8 parents were in the active disease group, 14 in the remission group, and 9 in the improved group. The follow-up survey included 5, 14, and 6 parents in the active disease, remission, and improved groups, respectively.1

Investigators collected sociodemographic data including age, years of education, employment status, and annual household income from parents. Parental anxiety was assessed using the State-Trait Anxiety Inventory-Form JYZ, while depression and quality of life were assessed using the Center for Epidemiologic Studies Depression Scale and the World Health Organization Quality of Life 26 scale, respectively.1

Upon analysis, parents in the active disease group had significantly greater anxiety levels than parents in the remission and improved groups (P < .050). Depression and quality of life scores were similar between all groups, although investigators pointed out the effect sizes were large when the active disease group was paired with the other groups in the second and follow-up surveys.1

Further analysis with Friedman’s test showed no significant differences in anxiety, depression, and quality of life scores among all groups. The State-Trait Anxiety Inventory-Form JYZ scores for parental anxiety did not differ significantly in any group during the survey period (active disease group, P = .500; remission group, P = .340; improved group, P = .120), nor did the Center for Epidemiologic Studies Depression Scale scores (active disease group, P = .850; remission group, P = .350; improved group, P = .060) or the World Health Organization Quality of Life 26 scale scores (active disease group, P = .950; remission group, P = .910; improved group, P = .960).1

“Our results emphasize the importance of providing support to parents, as it may contribute to the protection and maintenance of parental mental health, enabling them to provide better care for their children with active disease,” investigators concluded.1


  1. Nomura S, Hirano Y, Takeuchi I, et al. Anxiety, Depression, and Quality of Life in Parents of Adolescents with Inflammatory Bowel Disease: A Longitudinal Study. Pediatr Gastroenterol Hepatol Nutr. 2023 Sep;26(5):239-248.
  2. Boston Children’s Hospital. Inflammatory Bowel Disease. Accessed October 4, 2023.
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