Adolescent health and transitional care
Adolescent health care (including transitional care) for young people with long term conditions has been recognised as important for some time in the UK but only recently has it been specifically highlighted in national guidance documents and become the focus for research.
Transitional care in adolescent rheumatology
The main emphasis of Janet’s work over the last 10 years has been on the development of transitional care. This work started with her first major multicentre study in rheumatology which was the first objective evaluation of an evidence based transitional care programme in any chronic illness to date and as such is widely referenced. Key findings included the positive benefits of such transitional care in terms of quality of life, disease knowledge, patient and parent satisfaction, and vocational readiness. This study also led on to further work regarding vocational readiness in young people with juvenile idiopathic arthritis (JIA)
Transitional care for Young people with Long term conditions
In the light of the non-categorical nature of chronic illness during adolescence, Janet has since developed collaborations beyond rheumatology and is currently working on transitional care research within liver transplantation, diabetes, cerebral palsy and autism. She is also a member for reference groups for the following research projects: the STEPP project (Supporting Transitions for young people with lifelimiting conditions: researching evidence of positive practice. Funded by the Big Lottery Research Programme and led by the Social Policy Research Unit, University of York); An ESRC funded study at the University of Exeter (“Mastering chronic illness while growing up: the experiences of young adults and the advice they give to their contemporaries”. http://sites.pcmd.ac.uk/guci/ ) and is a member of the review team for a forthcoming Cochrane review of transitional care.
Adolescent health training for health professionals
Janet identified a major barrier to the delivery of adolescent health and transitional care to be the lack of training, similar to reports from Europe and North America. This discovery led to her involvement in the successful RCPCH elearning project which is the first formal training opportunity in adolescent health outside mental health in the UK. She is also member of faculty of the Euteach initiative responsible for the development of modules in transitional care, chronic illness and chronic pain during adolescence.
Over a quarter of all SLE starts during adolescence and in view of her interest in this area, Janet is the Local PI for Multicentre study: UK Juvenile Systemic Lupus Erythematosus Cohort Study & Repository (UK JSLE R&R). “Clinical characteristics and immunopathology of juvenile systemic lupus erythematosus” http://www.liv.ac.uk/ukjsle/index.htm.
Clinical excellence award for work that demonstrates an improved clinical outcome for patients (duration: 2.11)