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.
The psychological and social impact of Klinefelter’s Syndrome: Report for the Klinefelter’s Syndrome Association