K02 How To Improve Young People's Experiences Of Predictive Testing For Huntington's Disease

Abstract

Background A growing number of young people are requesting predictive testing for Huntington’s disease (HD). However, little research has explored whether they have different information and support needs from adults. We have previously described the experiences of young people (YP) undergoing predictive testing using rigorous qualitative methodology. Aim To identify key aspects of good counselling practice required to meet young people’s specific information and support needs. Methods Thematic analysis of interviews with 12 young people (aged 17–26) undergoing predictive testing for HD in Scotland. Results Key points for practice were: (1) Provide clear and engaging written and verbal information about the PT protocol, especially number of pre-test appointments and time span between each - signpost to resources such as HDYO www.hdyo.org; (2) YP may also be seeking support to deal with anger, intrusive thoughts or grief and loss - refer elsewhere if necessary; (3) Explore potential impact of results on family dynamics and family communication; (4) YP may have strong beliefs about their genetic status, discuss potential impact upon self-esteem and self-identity, especially of an unexpected result; (5) Encourage use of available family support before and after testing – this may not be through the direct family line; (6) Be clear about whose responsibility it is to make further appointments and (7) YP may require additional support or intervention between venepuncture and result. Conclusion Attention to these issues in genetic counselling could improve YP’s experiences of predictive testing for HD.