What’s Missing In Pediatric IBD Care

A recent single-site cross-sectional survey (HK Michel et al. J Pediatr 2020; 224: 94-101. Gaps Exist in the Comprehensive Care of Children with Inflammatory Bowel Diseases) of parents (n=161) and adolescents(n=84)  identified gaps in the comprehensive care of pediatric patients with inflammatory bowel disease (IBD).

Key points:

  • Discussions about family/peer relationships, school/extracurricular activities, and mood were not addressed in 30%-40% of participants.
  • Adolescents frequently reported that no one had talked to them about substance use (40%), sexual health (50%), or body image (60%)
  • 75% of adolescents and 76% of their parents reported that no one had discussed transitioning to an adult provider.

There is likely a wide variability in addressing psychosocial issues among providers and centers.  Limitations for this type of study includes recall bias and selection bias.

The associated editorial (MJ Ladinsky, MB Cohen, pg 20-22) urge us to ‘Mind the Gap.’  This likely means allowing sufficient time and arranging opportunities for teens to speak directly (& alone) with care provider.  Like other aspects of care, establishing a standardized approach is likely to be helpful.

My take: As noted on this blog previously, emotional health issues are likely more important than other aspects of IBD care that attract more consistent attention (eg. vaccination); the message is clear that these needs need to be addressed.

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