EB Clinet Online Seminar: 'Moving On – Transitioning EB Care from Paediatric to Adult Services'
Transitioning care for young adults with EB is complex. Specialist teams need to work together to continue to improve the transition process for young adults moving on from paediatric to adult care.
In this EB Clinet Online Seminar, Dr Anna Martinez provides an overview of the physiological aspects of puberty relating to severe RDEB. Dr Maria Bageta presents the current literature and publications relating to transitional care in EB. Janet Hanson summarises a framework of knowledge and practices, that facilitates shared decision making and the developmentally appropriate, person-centred support of children and young people during adolescence & emerging adulthood; before, during and after transition. Video footage reflects a thoughtful account of the young person’s journey of transition. At the end of the seminar, clinicians from the adult EB team at Guys and St Thomas' NHS Trust (GSTT) and Great Ormond Street Hospital (GOSH) answer questions from the audience and discuss the challenges of transitional care in EB.
Dr Anna Martinez (Consultant Dermatologist), Clinical Lead of the National Paediatric Epidermolysis Bullosa Service at Great Ormond Street Hospital, London, UK supported by Dr Maria Bageta (Consultant Paediatric Dermatologist) and Janet Hanson (EB CNS), both Great Ormond Street Hospital, London, UK
Q&A panelists: Dr Petrof (Consultant Dermatologist) , Dr Pablo-Lopez Balboa (Clinical Research Fellow), Caroline Mackenzie (Adult EB CNS GSTT), Kati Paalosalo-Harris (Adult EB CNS – Guys and St Thomas NHS Trust GSTT).
Clinical practice guidelines (CPGs) are recommendations for physicians for the treatment and care of patients with certain conditions developed by DEBRA International.
