Abstract:
Background
In 2014 the Management of inflammatory bowel disease in children and adolescents in New Zealand
clinical guideline (IBDCG) was introduced, outlining exclusive enteral nutrition (EEN) as the first-line
induction therapy in children with newly diagnosed Crohn’s disease (CD). The aim of this thesis was
to review disease remission and clinical outcomes at Starship Child Health (SCH) before and after
IBDCG implementation to determine if modifications are required to improve outcomes, and to
explore patient, whānau and health care professional (HCP) views and experience of the guideline.
Methods
A mixed-methods approach was used. A retrospective medical note audit of children diagnosed with
CD between June 2010 and July 2020 was completed. Patients were grouped into those diagnosed
before January 2015 (pre-2015) and after January 2015 (post-2015). Demographics, disease
characteristics, anthropometry, biochemistry, medications, and HCP contacts were collected at
diagnosis, weeks 8, 13, 26, and 52. Semi-structured interviews were conducted with patients and their
whānau and HCPs to determine the barriers and facilitators to EEN and solid food reintroduction.
Thematic analysis was conducted.
Results
Ninety-one children met the inclusion criteria: pre-2015, n=40 (median age 12.3 years) and post-2015,
n=51 (median age 11.9 years). Following induction therapy, 77.3% and 26.9% of children were in
remission (p=0.001), and after 52 weeks, 84.6% and 43.3% of children were in remission (pre-2015
and post-2015, respectively; p=0.003). Albumin was significantly different at diagnosis and across the
follow-up period between the groups (p≤0.001). Interviews with patients and whānau (n=10) revealed
three major themes 1) a difficult and emotional time, 2) food confusion, and 3) support, with subthemes clinical support and social support. Interviews with HCPs (n=7) revealed a single theme: a
multidisciplinary team is needed.
Conclusion
Implementing the IBDCG has not improved outcomes in children with CD managed by SCH.
Modifications to current practice and the IBDCG are recommended, including support groups, a
dedicated nurse specialist and dietetic support beyond EEN.
