During the last EnprEMA workshop, held in May 2015, adhering networks have been invited to provide a feedback on published guidance documents on the topic of transition from paediatrics to adults clinical care settings within the long-term clinical studies and follow up for chronic diseases.
To this aim, TEDDY partners collected and shared with EnprEMA Coordination Groups several recent publications on the theme, deriving from their direct research experience or knowledge.
Two documents deal with HIV-infected patients: the first one is the Spanish guidance “Clinical practice guidelines for integral approach of teenager with HIV infection”, updated in September 2015 and containing a specific insight on transition from adolescent to adult units. The second publication “Disease disclosure, treatment adherence, and behavioural profile in a cohort of vertically acquired HIV-infected adolescents. NeuroCoRISpeS study” deals with psycho-social, emotional and behavioural habits in HIV-infected patients and is aimed to identify relevant issues for the health programming.
An extensive recently-published monograph deriving from a large collaborative work developed by the International Network of Clinicians for Endocrinopathies in Thalassemia and Adolescent Medicine (ICET-A) has been also forwarded to EnprEMA. The publication includes both a literature review on general principles of good transition care for patients with chronic diseases and/or disabilities and a specific insight on medical care and transition phase for patients with thalassemia in different countries (Turkey, Iran, Saudi Arabia, Italy, Romania, Greece, Qatar, India, Oman, Egypt and Cyprus). A copy of the article can be friendly provided by request.