Teenagers with haemophilia transitioning into adult healthcare
Research type
Research Study
Full title
Assessing the needs and experiences of teenagers with haemophilia transitioning to adult care
IRAS ID
326294
Contact name
Heather J S Hanna
Contact email
Sponsor organisation
Imperial College London
Duration of Study in the UK
0 years, 5 months, 11 days
Research summary
Adolescents and young adults ordinarily struggle with the normal biological, physical and emotional changes of life. In addition to the teen's increased responsibility towards their own health, a chronic condition, like hemophilia, will bring further unique challenges to their development. Hemophilia can affect every aspect of an adolescent's development. Examples include certain physical activities being restricted; joint damage /acute bleeds altering the appearance of an individual; or school attendance being disrupted by bleeds. Another potential challenge will be moving towards self-management of treatment which can be challenging as some young people would have relied on parents and family to support them manage their treatment. In turn, this could affect the self-esteem of the individual.
By taking into consideration the thoughts of teenagers with hemophilia transitioning into the adult healthcare gives healthcare professionals the opportunity to improve the current "Ready, Steady, Go" Transition model in St Thomas and Evelina hospitals, London. The transition programme itself is a generic model that is used in majority of specialties as foundation for transitioning into adult healthcare.
The purpose of this study is to identify the specific needs/ thoughts of the adolescents with hemophilia especially regarding their perspective of the process itself. This will be carried out via interviews with the adolescents currently in the "Ready, steady, go programme" (transition process) and those that have already transitioned; in order to identify the facilitators and the barriers of the programme. In turn, future interventions may focus on these barriers or facilitators to improve the clinical outcomes and reduce the complications of hemophilia. At the same time, it is a chance to individualize/tailor the programme towards hemophilic individuals, instead of utilizing a generic transition model.
REC name
Yorkshire & The Humber - South Yorkshire Research Ethics Committee
REC reference
23/YH/0116
Date of REC Opinion
16 Jun 2023
REC opinion
Further Information Favourable Opinion