Introduction: Klinefelters Syndrome (KS) is a genetic condition affecting men with the potential to severely reduce testosterone levels and affect physical appearance. Being a syndrome there are a variety of different symptoms which individuals may experience to a great or lesser extent. With no screening programme in place, KS may not be detected until puberty, or until men have problems starting a family. As a result, many different healthcare professionals (HCPs) are involved in both diagnosis and care of men with KS. This survey sought to assess levels of satisfaction with information, treatment, and support.
Method: A survey designed in association with the Klinefelters Syndrome Association (KSA) was sent to 259 KSA members. 75 completed surveys were returned (29% response rate). Participants aged from 16 to 76 years (average: 44 years).
Results: Overall the picture was reasonably good, with 66% of participants generally satisfied with the attitudes of HCPs towards them and their condition. However, participants reported an absence of readily available KS-related information; 82% said if they wanted information they had to ask for it, but 40% felt a nuisance for asking. 48% needed help to understand the Internet-based information they found. The information the KSA provides was highly rated, with 64% using it to help them to ask questions of their HCPs. However, experiences of accessing the KSA varied greatly; while some HCPs recommended the KSA and/or provided their contact details, most participants had to rely on finding it on the internet, or through recommendations from other sources.
Conclusions: If the NHS website was to provide accurate information on the symptoms and impact of KS with links from the NHS to relevant support organizations (eg the KSA), then men with KS, their families and HCPs would have access to good quality, easily comprehended information on this health condition.
Declaration of interest: There is no conflict of interest that could be perceived as prejudicing the impartiality of the research reported.
Funding: No specific grant from any funding agency in the public, commercial or not-for-profit sector.