Why was this study done?

Pediatric patients with IBD have a higher rate of psychosocial needs than young people without IBD, including anxiety, low mood, fatigue, and body image complexities. Multidisciplinary care, including psychosocial providers (psychologists, social workers), is considered the standard of care in pediatric IBD. However, there is limited research exploring how medical providers (e.g., physicians) think about and engage with psychosocial providers in pediatric IBD.

How was the study designed?

This was a one-time, online survey study completed by 101 medical pediatric IBD providers from 52% of American ICN centers. The survey included questions about psychosocial services and providers for pediatric IBD patients at the responding medical provider's center, including access/availability of psychosocial providers, settings that psychosocial providers work in (inpatient, outpatient), referral reasons why patients are referred to psychosocial care (e.g., pill swallowing challenges, adjustment to a new IBD diagnosis), and barriers to psychosocial care.

What were the results?

Over 90% of the medical providers indicated that psychosocial care is very important and that they referred their IBD patients to psychosocial services for many different referral reasons, especially for help coping with symptoms, dealing with the diagnosis, and addressing existing mental health concerns. However, there were barriers to engaging with psychosocial providers including limited psychosocial providers at ICN centers and availability of psychosocial providers that are currently working at ICN centers. In addition, many reported perceiving that patients/families were not open to psychosocial care. Overall, medical providers estimated that two thirds of their IBD patients could benefit from psychosocial services but that only a quarter of the medical providers had access to a psychosocial provider at their center. 

What does this mean for patients, families and clinicians?

Medical providers in pediatric IBD expressed strong interest in the psychosocial care of their pediatric IBD patients, and perceived psychosocial providers are important members of the multidisciplinary IBD team. While participants endorsed strong knowledge of how psychosocial providers can support IBD care (e.g., helping with adjustment to IBD, adherence), notable barriers to equitable access to psychosocial care include limited psychosocial providers and perceptions that patients/families are not open to psychosocial care in pediatric IBD. Increasing the integration of psychosocial providers through hiring more psychologists and social workers and continuing to educate patients and families about why psychosocial care is an important element in pediatric IBD care for all children and families is needed moving forward. 

Study authors

David, Jennie G. PhD; Sejkora, Ellen PhD; Michel, Hilary K. MD; Mackner, Laura PhD; ImproveCareNow Learning Health System

Study status

Published in May 2023. You can locate it:

  • On our website and online in JPGN Reports
  • Pediatric GI Health Care Professionals’ Perceptions of and Engagement With Psychosocial Providers in Pediatric IBD Care. JPGN Reports 4(2):p e305, May 2023. | DOI: 10.1097/PG9.0000000000000305

About ICN Research Explained

We believe that in order to truly outsmart IBD, the questions we ask and the answers we find must be generated by and be useful to the people whose lives they will impact – patients and their families. ImproveCareNow (ICN) research is prioritized based on what matters most to patients and parents, and we are committed to sharing our results so everyone can understand and take advantage of what’s been learned. The ICN Research Committee has teamed up with patients and parents/caregivers to create and share accessible summaries of completed research called ICN Research Explained

Prepared by: Jennie David (first author) and David Wohl (parent)


Get #InTheLOOP with ICN Research Explained posts on the ImproveCareNow blog >>
Subscribe to Research Updates - a periodic eNewletter with ICN research opportunities & results!
IBD is part of your life, but you are not alone! Join our CIRCLE to connect with a welcoming & supportive community and receive IBD resources, community stories, and ImproveCareNow updates & opportunities. We are #BetterTogether 💚💙

Built by Veracity Media on NationBuilder