Time Doesn't Heal Parents' Mental Health Wounds From Kids' IBD Dx

Anxiety and depression symptoms were similar among parents of children with inflammatory bowel disease (IBD), regardless of whether the diagnosis was recent or not, a researcher said.

There was no significant reduction in mean PROMIS anxiety scores or Patient Health Questionnaire 8 (PHQ-8) depression scale scores among parents whose children had a new diagnosis compared to those with an established diagnosis, reported Kevin Cesa, MD, of the University of Pittsburgh Medical Center.

However, post-traumatic stress disorder (PTSD) scores on the Impact of Event Scale-Revised (IES-R) did decrease over time, he said at a poster presentation at the virtual Advances in Inflammatory Bowel Diseases meeting.

Cesa told MedPage Today the results of the study were unexpected. "I was surprised," he said. "I thought parents would be most vulnerable for distress soon after their child's diagnosis, but there was no difference in the rates of anxiety or depression when comparing parents whose kids were diagnosed 3 months ago or 5 years ago."

"During my first year of peds GI fellowship when we cared for patients with medically refractory disease who needed surgery, often the pediatric patients were very resilient and focused on getting better to get back to school, sports, and out of the hospital," Cesa explained. "Conversely, the parents were clearly in distress and overwhelmed by their child's disease and trying to juggle the rest of their work and home responsibilities."

Cesa added that there has been little in the literature to date about distress among these parents.

Reached for comment, Dana Lukin, MD, of Weill Cornell Medicine in New York City, said "the key take-home point is that providers should be very aware not only of the psychological and emotional stress these chronic inflammatory diseases impose on pediatric patients with new and existing diagnoses of IBD, but also on the parents and caregivers of these children, and meaningful modalities to help mitigate these stressors are in high demand."

Cesa and colleagues evaluated 155 parents who had children diagnosed with IBD and analyzed them for mental health disorders. Parents were grouped into two cohorts based on time since their child's diagnosis: less than 6 months (earlier; n=52) or over a year (recent; n=103) since the diagnosis.

Main outcomes assessed symptoms of anxiety, depression, and PTSD through validated instruments.

For the parents, most were white (92-94%) and more than three-fourths were women (76-81%). For the children, the average age was 13 to 14 years, and the majority were boys (59%) -- most had Crohn's disease (58-66%).

There was no significant difference in mean anxiety or depression scores on PROMIS or PHQ-8 between the early or recent diagnosis groups, but there was a significant decline in mean PTSD scores on the IES-R:

• PROMIS: 54.15 vs 52.92, respectively (P=0.2197)
• PHQ-8: 4.67 vs 4.57 (P=0.266)
• IES-R: 13.57 vs 10.92 (P=0.0177)

Cesa and colleagues found that close to 20% of parents in both groups had moderate or severe anxiety symptoms, 10-13% had moderate or severe depression symptoms, and 11% of parents in the recent diagnosis group had moderate and severe PTSD symptoms compared to 6% in the established diagnosis group.

"This study was important as in any chronic disease, it is the parents of pediatric patients that monitor their child's symptoms, bring them to appointments, give their medications, and so forth," said Bincy Abraham, MD, MS, of Houston Methodist Hospital, who was also not involved with the research. "We may need to consider not just addressing the patients, but the parents as well."

Deborah Goldman, MD, of the Cleveland Clinic in Ohio, who was also not involved with the research, agreed that the pediatric gastroenterology community should implement psychological screening for parents and patients.

"Providing excellent education, listening skills, along with potential treatment options with cognitive behavioral and problem-solving therapies may be most useful and beneficial," she told MedPage Today.

The analysis had several limitations, including a lack of diversity. Socioeconomic status or insurance data were not collected outside of "household occupation prestige" scoring, which could be subjected to reporting bias. Single parents also only represented 10-15% of the participating parents, which may have skewed the results.

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