Panel: youth and Education Maurizio Vecchi, M.D. University of Milan

IBD are challenging diseases ……from the beginning…. …..through their entire course….

The onerous course of the disease Difficult to diagnose (long delay in diagnosis) Life-time duration Need for maintenance therapy Frequent relapses Many extraintestinal complications Frequent, complex surgery Disease and drug-related cancers

Adolescence is a very difficult time of our life…… With a strong request for (and fear of) freedom With a recognition of personal duties but a low consideration of them With a struggle to set his/her own independence With many uncertainties

Imagine the impact of such diseases on an adolescent -1- Pains and suffering Embarassing symptoms Limitations Needs Duties Confusing perspectives for future health

Imagine the impact of such diseases on an adolescent -2- Difficulties at coping with the disease, at school, at work, with friends, with the boy (girl)-friend High risk of depression, anxiety, social isolation, altered self-image Difficult relationships with parents and doctors

As a consequence… Very difficult to evaluate the real clinical condition Very low compliance to diagnostic tests and therapies Far from an ideal management of the disease Worsening of the clinical and psychological situation

Epidemiological trends Diagnosis of IBD among young or very young subjects is becoming more frequent: Stockholm 2002-2007 CD 9.1/100.000/y UC 2.8/100.000/yr 60 % of studies report increase in pediatric CD incidence 20 % of studies report increase in pediatric UC incidence Diffuse finding (Sweden, China, Finland, Scotland, Denmark, USA, Italy) Young patients frequently have panenteritis

Epidemiological trends The course of early-onset IBD is suggested to be rather unfavourable Diagnosis in young subjects suggests an important role of genetic factors

What to do Favour the knowledge of the disease by the young patients emphasizing the possibility of a favourable course, when disease is well managed. Organize specific supports at school and at work for young patients with aggressive IBD. Favour the sharing of disease experience among patients (EFCCA, AMICI, etc.). Identify patients with impaired quality of life and implement strategies that may improve it, so that they may have an easier transition to adulthood while living with IBD.