About the clinic

What is The Klinefelter Syndrome Multi-Specialty Clinic?

The Klinefelter Syndrome Multi-Specialty clinic is one of the first in the country to address the needs of patients diagnosed with Klinefelter (XXY) Syndrome. Klinefelter Syndrome affects 1:500 men and is thought to be one of the commonest congenital chromosomal disorders.

This is a one-stop clinic that covers all important aspects of the disease, with specialists in genetics, endocrinology, urology, reproductive medicine and radiology all seeing and counselling patients through the various aspects of the condition. A nurse counsellor is present to address any other personal concerns a patient may have. An individualised management plan is then created for each patient based on his priorities and this is given to both patient and GP/referring clinician. Having a one-stop clinic visit reduces the number of visits a patient may have to make and also effectively ensures that all the key issues in the disease can be covered an address by a dedicated team in a specialist setting. In addition, a member of the Klinefelter Syndrome Association (see link below) may be present who may be able to give a personal view on living with Klinefelter Syndrome.

 

As patients will be seeing a few specialties and will be having a few time-dependent tests on the same day, it is important to arrive promptly in the morning at 9 am and allow at about 2 to 2.5 hours in the hospital to allow all the tests and consults to be completed.

 

Who can attend/receive the service?

 

Any patient newly diagnosed with Klinefelter Syndrome or patients with known Klinefelter Syndrome who have unaddressed fertility/endocrine/genetic counselling concerns. All patients can be referred from their GP or from their secondary care clinicians. For referrers, please indicate if an interpreter is required, it is not possible to arrange this without advance notice. Partners of patients with Klinefelter Syndrome are also welcome to attend with the patient.

 

 

Where do I need to go?

 

The clinic is at the Tabard outpatients of Guy’s Hospital (Ground Floor). It is next to the Minor Injuries Unit and is clearly signposted. All patients should arrive by 9 AM as there will be special time-sensitive tests organised. It is designed as a one-stop clinic where all tests required to plan the further management of Klinefelter Syndrome will be done so only one attendance at the clinic is required.  

 

A personalised management plan is then discussed at the end of the clinic amongst the specialists. The patient and referring clinician will receive this detailed plan in a letter. 

Patient transport available for those patients who are eligible for this.

 

Does it cost anything?

 

No the clinic does not cost anything

 

What do I need to bring with me?

 

If available, please bring along all previous clinical letters about the condition including blood tests, semen analysis results and genetics results. Patients may have an ultrasound of the scrotum so please wear comfortable clothing. Blood tests may also be done (in the morning before 10 a.m.). A semen sample may also be required so abstinence for at least 48 hours is advised. Partners of patients with Klinefelter Syndrome are also welcome to attend with the patient, especially if fertility is a concern.

 

Useful sources of information

 

The Klinefelter Syndrome Association - www.ksa-uk.net 

The Klinefelter’s Syndrome Association (KSA) offers support and information to all affected by, or having an interest in, Klinefelter’s Syndrome (KS) and XXY