Impact of Interdisciplinary Team Care for Children With 22q11.2 Deletion Syndrome

Scott E Hickey1,2, Brian Kellogg3, Meghan O'Brien1

  • 1Nationwide Children's Hospital, Columbus, OH, USA.

Insights

Multidisciplinary team care significantly improves guideline adherence for children with 22q11.2 deletion syndrome (22q11DS). This approach enhances care compared to standard treatment, highlighting its importance for managing this condition.

Area of Science:

  • Genetics and Genomics
  • Pediatric Healthcare
  • Clinical Quality Improvement

Background:

  • 22q11.2 deletion syndrome (22q11DS) is a complex genetic disorder requiring comprehensive, coordinated care.
  • Adherence to disease-specific guidelines is crucial for optimizing health outcomes in children with 22q11DS.
  • The impact of multidisciplinary team care on guideline adherence in this population has not been fully elucidated.

Purpose of the Study:

  • To evaluate disease-specific guideline adherence in children with 22q11DS receiving multidisciplinary team care.
  • To compare guideline adherence between children with 22q11DS receiving team care versus those not receiving team care.
  • To assess the impact of a 22q specialty clinic visit on guideline adherence.

Main Methods:

  • Retrospective chart review and quality improvement project conducted at a tertiary care pediatric hospital.
  • One hundred eighty-nine patients with 22q11DS were divided into two groups: team care and non-team care.
  • Guideline adherence was measured as the percentage adherence across 8 disease-specific guidelines.

Main Results:

  • Mean guideline adherence was significantly higher in the team care group (83%) compared to the non-team care group (42%, P < .001).
  • For patients receiving team care, adherence increased from 63% before a clinic visit to 86% six months post-visit (P < .001).
  • Both provider and patient factors contributed to guideline nonadherence.

Conclusions:

  • Multidisciplinary team care is strongly associated with improved guideline adherence in children with 22q11DS.
  • Further research is warranted to explore the long-term health outcome benefits of team care for 22q11DS patients.
  • Specialty clinics play a vital role in enhancing adherence to care guidelines for rare genetic conditions.
Abstract

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