🔴 “The Lived Experience of Klinefelter Syndrome, A Narrative Review of the Literature.”

In a 2019 review covering two decades of research about lived experience, healthcare provision for children & adults with Klinefelter syndrome (KS) is described as generally poor, misinformed and lacking expertise. The review notes consensus around the importance of a multidisciplinary teams as a means of providing effective care, yet such coordinated approaches are seen to be lacking.

The authors cite only 6% diagnosis in children prior to age 10, and call for “inclusion of this otherwise hidden group”, with a central focuses on what actually matters to those with KS in order to “make positive improvements to diagnosis, outcomes and encounters with healthcare professionals”, as well as the “n ...