Executive Summary
Aims:
In collaboration with the Klinefelter’s Syndrome Association (KSA) we agreed to plan and deliver an impact study. This comprised two elements: an interview with KSA members and a questionnaire aimed at helping us to address the following areas:
•  Participant’s experiences of having KS, and where they feel they have been most in need of information and support.
•  The impact of KS as a condition affecting the whole of life, including quality of life issues such as the impact of KS on an individual’s ability to work, their finances, relationships,etc.
•  Identifying the most appropriate services and approaches needed in delivering support to individuals with KS and their carers in response to their identified needs.
•  To disseminate the results of the research, on behalf of people with KS, with a view to influencing policy and/or improving service provision.

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