About the research project
The clinical validity and acceptability of alternative methods of monitoring for young people with
Congenital Adrenal Hyperplasia (CAH)
Current monitoring for CAH involves regular biochemical analysis with intensive blood sampling, to look at levels of cortisol and other steroids in the blood. This sometimes leads to stays in hospital and painful cannulations.
We would like to
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Find out if alternative methods of monitoring are clinically valid (i.e. the cortisol levels in your blood correlate with cortisol levels in your hair and saliva)
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Also undertake additional anthropometric measurements – special body measurements – as well as routine height and weight measurements
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Find out whether young people would find these monitoring methods acceptable, as a focus on acceptability has been largely ignored, and it has been shown that this should be considered when designing and implementing new health care interventions.
So, there are issues in the care and management for young people with CAH.
We already know that:
Hormonal changes during puberty can lead to inadequate suppression of adrenal androgens
Adherence to medication in adolescence and young adulthood can be difficult
Treatment and management regimes should be reassessed during adolescence and adulthood
The main concern is that the management of CAH during adolescence from paediatric to adult care is challenging, and there are no guidelines to help with this management.
This has led to the development of this project to explore these factors in more detail, and see if new guidelines for management can be considered. We hope to get 150 people, over 12 years of age with CAH, to join this part of the project.