🔴 “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 “need for good quality professional support to plan for the care of children with KS”.
Authors: Hanna ES, Cheetham T, Fearon K, Herbrand C, Hudson N, McEleny K, Quinton R, Stevenson E, Wilkes S; Edited: Alberto Ferlin. Reviewed: Claus H. Gravholt, Anne Skakkebaek
Publication: Frontiers in Endocrinology, 2019. doi: 10.3389/fendo.2019.00825. Original Article (pdf download) available on chromodiversity.com.
Keywords: #Klinefeltersyndrome, #geneticdisorders, #fertility, #patientexperience, #narrativeliteraturereview
