Background: Paediatric patients with IBD move from family-oriented paediatric to individual-oriented adult gastroenterology services at a time of significant physical and psychological change. There is some evidence that coordinated transition programmes may improve outcomes in IBD when transferring to adult services. The health-related quality of life (HRQoL) of adolescent/young adults following transfer to adult services has not been described.
Methods: An observational, multi-centre, mixed methodology study of adolescent/young adult patients (age ≥16 years) with a confirmed diagnosis of IBD before age 16 who had been under the care of adult services for ≥12 months at recruitment was conducted in 11 UK centres. Transition visits were defined as those involving clinical staff from both paediatric and adult services; transition patients had attended ≥2 transition visits and non-transition patients attended none. Patients completed the following questionnaires at recruitment: Short Inflammatory Bowel Disease Questionnaire (SIBDQ), Inflammatory Bowel Disease Control Questionnaire (IBDCQ-8 and IBDCQ-VAS [visual analogue scale]), Hospital Anxiety and Depression Scale (HADS), Work Productivity and Activity Index (WPAI) and self-reported days of education lost due to IBD. Socioeconomic status was measured using the English Index of Multiple Deprivation (IMD).
Results: Transition (n=95) and non-transition (n=34) patients were similar in terms of demographic and clinical characteristics at recruitment (transition: median age 19.6 years; 47% female; 78% CD; median 2.1 years since index visit) and non-transition patients (n=34; median age 19.3 years; 41% female; 74% CD; median 2.3 years since index visit; all p>0.05). Overall, patient-reported quality of life and perceived IBD control were similar in transition and non-transition patients (all p>0.05; see table). Significant symptoms of anxiety and depression were reported by 20% and 2%, respectively, of transition patients and by 13% and 0%, respectively, of non-transition patients (p>0.05; see table). Of those in employment, 16% of transition and 27% of non-transition patients had time off work in the previous week. Time lost from education and socioeconomic status were similar in transition and non-transition patients (both p>0.05; see table).
Conclusions: Surveys collected from at least 120 adolescent/young adult patients with IBD taking part in this study describe health related quality of life at this time point.