Search

The Lived Experiences Of Klinefelter: 20 Years of Psychological & Social Research

"The presence of an extra 47th X chromosome is common and almost every clinician in almost every sub-specialty of medicine will knowingly or unwittingly treat boys or men with Klinefelter (‘XXY’) and girls or women with Triple X (‘XXX’).
Yet fewer than 10% of cases of Klinefelter Syndrome (KS) are diagnosed before puberty, with only 6% diagnosed before aged 10 and 21% diagnosed before aged 20.
A lack of or late diagnosis remains a critical problem in relation to KS. The perception that all persons with KS will demonstrate “textbook” signs is viewed as compromising the ability of patients to obtain a diagnosis.
The experience with healthcare for persons with KS is described as poor, ranging from a lack of information to misinformation, due to a perceived lack of expertise among healthcare professionals.
Coordinated approaches to care are currently seen to be lacking despite evidence of the effectiveness of such approaches."
(Abridged from The Lived Experiences Of Klinefelter Syndrome: A Narrative View of the Literature).


For more information click below:

The Lived Experiences Of Klinefelter Syndrome: A Narrative View of the Literature. A review of 22 selected research papers from the past 20 years relating to the psychological and social aspects of Klinefelter syndrome (KS).

Frontiers in Endocrinology, 26 Nov. 2019

25 views0 comments