Endocrine Abstracts

The European Academy of Andrology (EAA) published the first consensus guideline on KS in 2021 to standardise the care provided to patients with Klinefelter Syndrome (KS) in various developmental stages. We conducted an online national survey advertised in the British Society of Paediatric Endocrinology and Diabetes newsletter (BSPED) to evaluate clinical care provided to children and young people (CYP) with KS. The survey ran over a period of 4 months (January-April 2023). We received 16 responses out of 22 specialist centres (response rate 72.7%). Majority of the respondents are paediatric endocrinologists (PE) (12, 75%), 2 endocrinology registrars and 2 paediatricians with interest in endocrinology. The lead responsibility for ongoing care of CYP with KS is taken by PE in 2/3rd of centres (rest Community Paediatricians) The commonest age at which CYP with KS are referred to a PE is 11-13 years. The reasons for referral to a PE in a decreasing order are gynaecomastia, delayed puberty, cryptorchidism, behavioural issues, delayed speech and tall stature. Local guidelines for management of KS CYP are available to 62.5% of respondents. When local guidelines are unavailable, clinicians refer to EAA guideline, UpToDate, Medscape, etc for management decisions.Table showing annual clinical/biochemical tests and the number of respondents undertaking them.Some clinicians perform Inhibin B/AMH at the start of pubertal induction, while others only prior to fertility assessment referral. Testosterone is started when a KS young person has raised LH with low testosterone by 12 (75%), slow pubertal progression by 10 (50%), delayed puberty by 9 (56.3%) and raised LH with normal testosterone by 3 (18.8%) respondents. 81.3% follow a transitional care pathway and 58.3% refer KS CYP to andrology clinic. Our survey has highlighted variation in the care provided to CYP with KS. Is a UK consensus guideline for managing KS CYP warranted?