Abstract

Abstract Background IBD, including Crohn’s disease (CD) and ulcerative colitis (UC), are chronic recurrent inflammatory diseases of the gastrointestinal tract, most often diagnosed in adolescence and young adulthood. Extra-intestinal manifestation (EIM) may be present initially in up 50% or before IBD is diagnosed. IBD and its complications are associated with morbidity and has considerable impact upon patients’ health-related quality of life (HRQoL). HRQoL is an essential complement to the examination of clinical symptoms and functional limitations and has emerged as an important outcome measure to evaluate an individual’s adaptation to a chronic medical condition like IBD. It is known the neurocognitive maturation that support integration of executive and emotion systems are not fully mature until 25 years, making this period a time of socio-emotional vulnerability and adjustment. So, our objective was to evaluate the HRQoL in adolescents and young adults (AYA) patients with IBD and compare with a peer’s health control and investigate the variables which can be attributed to HRQoL in these patients. Methods 59 AYA IBD patients (13–25 years) and 60 AYA healthy controls (13–25 years) completed the Pediatric Quality of Life Inventory 4.0 (PedsQL4.0), Short Form Health Survey (SF-36) questionnaires and pain visual scale, according to age. After we compared HRQoL between Crohn’s disease (CD) vs. UC (ulcerative colitis) in AYA population. The demographic data, extra-intestinal manifestation, overlap syndromes, disease active status, treatment and outcomes were also evaluated. Results PedsQL4.0 domain ‘school/ work’ and SF-36 domain ‘general health perception’ was reduced in IBD AYA patients compared with healthy controls (p < 0.05). However, no difference in all domains and pain scale was observed between CD and UC AYA patients. Disease activity, as well as extra-intestinal manifestations, overlap syndromes, treatments and outcomes, did not influence the HRQoL of the AYA patients. Autoimmune sclerosing cholangitis and the use of prednisone were significantly higher among UC patients, whereas previous gut surgery was higher between CD patients. However, these disease factors did not significantly influence the HRQoL between CD vs. UC. Conclusion HRQoL was significantly lower among IBD AYA patients when compared with healthy controls. Disease factors did not influence HRQoL between CD and UC AYA patients. These results highlight areas to focus clinical attention for assessment and future interventions among AYA with IBD.

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