Background: IBD is a chronic disease and approximately a quarter of patients are diagnosed before 20 years of age. A well-structured transition pathway can increase their self-efficacy and independence. Patients transitioning to Beaumont IBD services attend a structured transition clinic in pediatric hospital and at Beaumont hospital.
The objective of this cross-sectional study was to assess adolescents' perspective and self-efficacy with IBD post transition to Adult care.
Methods: Adolescents who transitioned through the structured pathway were eligible for the study. Data on patient's age, gender, IBD type, disease history and treatment were retrieved from the medical records. A questionnaire (including VAS and Likert scale) on patient's perspective and self-efficacy containing items on knowledge of disease, diagnostic tests, medications, and transition process was rated by the adolescents over the phone. Collected data was analysed with SPSS software.
Results: Of 23 eligible adolescents 19 (82.6%) participated in the study. Patient demographics: Mean age (years): 17.52±0.90, Male: 8 (42.1%), Female: 11 (57.9%), Crohn's Disease (CD): 11 (57.9%), Ulcerative colitis (UC): 8 (42.1%). The domains on the self-efficacy questionnaire showed good internal consistency (Cronbach's a: 0.72). The median for the domains of independence, knowledge of disease, diagnostic tests, treatment and medication use were >70% of max score. Domains of comfort with adult IBD service, independence with OPD visits and transition process had median of >90% of max score. There was no statistically significant difference in mean scores for general independence and general comfort between male vs female; and between CD vs UC on unpaired t-test (p>0.10). 7 (36.8%) stated that their disease will improve, 2 (10.5%) stated stay the same and 10 (52.6%) don't know how their disease will evolve.
Conclusions: Adolescents who recently transitioned to the adult IBD services rated high levels of independence, knowledge of IBD, diagnostic tests, treatment, self- efficacy in medication use and independent OPD visits. Also there is no correlation between gender, type of disease and patients' independence and comfort scores. However more than half of the participants showed uncertainty about their future with IBD.