TRIATHLON consensus study
Research type
Research Study
Full title
Transitional Care for Young People with Long Term Conditions
IRAS ID
211037
Contact name
Matthew Peak
Contact email
Sponsor organisation
Alder Hey Children's NHS Foundation Trust
Duration of Study in the UK
0 years, 5 months, 1 days
Research summary
Transition from child-centered health services to adult services is acknowledged to be a challenging period of time for young people with long-term conditions. The responsibilities of young people in managing their own condition increases within the context of adult services, and despite the increased need of support during this sensitive period, transition is often a disorientating and fragmented process.
Recently there has been national and international recognition of the need to prioritize the development and implementation of good models of transitional care, in order to foster optimum outcomes for young people with long term conditions in terms of their health and well-being, and their educational, employment, and life opportunities. However, evaluating what successful transition looks like is difficult in the absence of consensus as to which outcome domains are most critical to measure.
Using consensus methodology, this study will seek to explore which processes and which outcome of transition are most important to key stakeholders (young adults transitioning/transitioned to adult health services, their parents, and health professionals involved in the transitioning of patients between child and health services). It is envisioned that the outcomes most valued by stakeholders will inform the development of a core outcome set used for evaluating transition interventions. Additionally, by exploring stakeholder's preferences over which processes are key to a good transition, this will inform the development of a future transition intervention (e.g. transition passport).
Whilst this study will focus specifically on young people with epilepsy and juvenile idiopathic arthritis as exemplar health conditions, it is envisioned that the outputs of the study will have general utility across health specialties.
The mixed-method consensus workshop will have two parts: i)focus group ii)prioritization task. Data collection and storage will comply with relevant data protection requirements and guidelines.
REC name
South East Scotland REC 02
REC reference
16/SS/0148
Date of REC Opinion
25 Aug 2016
REC opinion
Further Information Favourable Opinion