Abstract
Background
Pediatric-to-adult transition of care in Inflammatory Bowel Disease (IBD) can be challenging for patients between 18–25 and the lack of continuity of care is perceived to be causative in loss to follow-up, treatment disruption and poor clinical outcomes.
Aims
The objective of this study was to determine whether regular email contact with a single IBD nurse could improve health outcomes when delivered during the last 3 months of pediatric care and the first 9 months of adult care.
Methods
Patients were randomized in a 1:1 ratio to the intervention and control groups. Randomization was stratified by center (SickKids, McMaster) and anticipated post-transfer setting (academic vs. community). All individuals enrolled completed a baseline questionnaire (disease phenotype, medications, disease activity (Harvey Bradshaw Index (HBI), Pediatric Ulcerative Colitis Activity Index (PUCAI)), transition readiness (Transition Readiness Assessment Questionnaire (TRAQ), patient satisfaction (CACHE questionnaire), IBD knowledge (Crohn’s and Colitis Knowledge Questionnaire (CCK)). This was repeated every 6 months. MyHealth Passport was distributed twice. The IBD nurse interacted monthly with intervention patients and IBD educational modules were delivered every two months. This study was REB approved. We compared IBDQ, HBI, PUCAI, TRAQ, CACHE, CCK scores between groups. Paired Students t-test or the Wilcoxon ranksum test were used to assess for statistically significance (p-value of <0.05).
Results
151 patients were recruited to the study (72 intervention, 74 control, 5 lost). 78% of the population was from SickKids. 76% of the population were transferred to an adult academic setting. 74% had Crohn’s Disease. 27% had perianal disease and 10% had pediatric growth delay. 86% of UC patients had pancolitis. The mean age was 17 with a mean age of diagnosis 13. 19% had prior surgery, 66% were on anti-TNF therapy and 93% had self-reported active familial psychosocial support. There was no significant difference at 12 months between intervention and control groups with respect to HBI, PUCAI, IBDQ, CACHE. At 12 months the intervention group scored lower on TRAQ (3.51 vs 3.61, p=0.02). At 12 months the intervention group scored higher on CCK (14.61 vs 13.57 p=0.05). When the difference between 12 month and baseline scores for each group were analysed, there was no difference in HBI, PUCAI, CACHE, CCK. The difference in IBDQ was larger in the control group (-31.90 vs -21.11, p<0.001).
Conclusions
Standardized routine email interactions between an IBD nurse and patients does not reliably improve most traditional disease outcomes. It is unclear whether a longer duration of intervention, an in-person component to the intervention and/or a change in metrics are needed to improve impact.
Funding Agencies
CCC