KLINEFELTER SYNDROME, COVID 19 and THROMBOEMBOLIC RISK

The Klinefelter Multi-Specialty Clinic at St Thomas Hospital, London is trying to estimate the risks and burdens of patients with Klinefelter Syndrome (KS) during the CoVid 19 pandemic, especially in relation to thrombo-embolic events like deep vein thrombosis (DVT) - blood clot in leg, pulmonary embolism (PE) - blood clot in lung & strokes. These questions can help us tailor advice and guide recommendations for the national-access clinic and for other KS bodies such as the Klinefelter Association (KSA). Thank you for your time and effort in helping us. The survey should take about 5 mins to complete. For more information about the clinic & KSA please visit theklinefeltersyndromeclinic.com & www.ksa-uk.net - PLEASE NOTE THAT THERE IS CURRENTLY NO EVIDENCE THAT KS PATIENTS ARE AT HIGHER RISK OF COVID 19 THAN THE GENERAL POPULATION.

Question Title

* 1. Have you ever had a proven thrombo-embolic event (e.g. deep vein thrombosis (DVT) - blood clot in leg / pulmonary embolus (PE) - blood clot in lung)/ stroke )?

Yes - once (DVT)

Yes - more than once (DVT) - please specify number in comments

Yes - once (PE)

Yes - more than once (PE) - please specify number in comments

Yes - DVT & PE - please specify number in comments

Yes - Other (including stroke)

Other (please specify)

Question Title

* 2. When you had your thrombo-embolic event (DVT/PE/stroke) were you on any testosterone - enhancing therapy ?

Yes - Testosterone Gel

Yes - Testosterone (intranasal)

Yes - Testosterone tablets

Yes - Testosterone injections monthly (Sustanon)

Yes - Testosterone injections 3-monthly (Nebido)

Yes - Clomid/Clomiphene

Yes - Anastrazole/Levotrozole

Yes - Gonasi/Pregnyl/HCG injections

Yes - Menopur/Ovitrelle/GonalF/FSH

Yes - combination of above (please state in comments)

Yes - other (please state in comments)

Other (please specify)

Question Title

* 3. If you were on testosterone enhancing medication in Q2, how long were you on the medication before you had the DVT/PE/stroke?

less than a month

1-3 months

3-6 months

6-12 months

12-24 months

More than 24 months (please state in comments)

Other (please specify)

Question Title

* 4. Were you made aware of the potentially increased risk of thrombo-embolic events in both Klinefelter Syndrome and in testosterone-enhancing medication?

Yes for both (please indicate source in comments eg specialty doctor, G, KSA, other KS patient)

Yes for KS, Not for medication (please indicate source in comments eg specialty doctor, G, KSA, other KS patient)

Yes for medication. Not for KS (please indicate source in comments eg specialty doctor, G, KSA, other KS patient)

No - I did not know about the increased risk in either KS or testosterone enhancing medication

Other (please specify)

Question Title

* 5. What is your age? Also in the Comments, please indicate how old you were when you had your first thromboembolic event (if applicable)

Under 18

18-24

25-34

35-44

45-54

55-64

65+

Other (please specify)

Question Title

* 6. What is your BMI (body mass index) - if unknown please state height & weight in comments. Also importantly please state any medical condition(s) and all medication in the comments

<20

20-25

25-30

>30

Don't know (please state height & weight in comment line)

Other (please specify)

Question Title

* 7. Did you have a proven or suspected CoVID 19 infection?
PLEASE NOTE THAT THERE IS CURRENTLY NO EVIDENCE THAT KS PATIENTS ARE AT HIGHER RISK OF COVID 19 THAN THE GENERAL POPULATION.

Yes - suspected

Yes - proven with test

Other (please specify)

Question Title

* 8. If you answered YES to Q7, did you get admitted to hospital and/or intensive care and for how long?

No I was at home

Yes I was in hospital for 1-4 days without intensive care support

Yes I was in hospital for 1-4 days with intensive care support

Yes I was in hospital for 5-7 days without intensive care support

Yes I was in hospital for 5-7 days with intensive care support

Yes I was in hospital for 1- 2 weeks without intensive care support

Yes I was in hospital for 1- 2 weeks with intensive care support

Yes I was in hospital for > 2 weeks without intensive care support

Yes I was in hospital for > 2 weeks with intensive care support

Other (please specify)

Question Title

* 9. After you were suspected to have /diagnosed with CoVID 19 did you subsequently have a proven thrombo-embolic event (DVT/PE/stroke) ?

Yes - within 1 week of symptoms starting (at home)

Yes - between 1- 2 weeks of symptoms starting (at home)

Yes - after 2 weeks of symptoms starting (at home)

Yes - within 1 week of symptoms starting (in hospital)

Yes - between 1- 2 weeks of symptoms starting (in hospital)

Yes - after 2 weeks of symptoms starting (in hospital)

No thromboembolic events

Not applicable - No suspicion/diagnosis of Covid 19

Other (please specify)

Question Title

* 10. If you were hospitalised, were you given injections or tablets to thin your blood to prevent risks of thrombo-embolic events (DVT/PE/stroke)?

Yes - injections

Yes - tablets (Aspirin)

Yes - tablets (Warfarin)

Yes - tablets (other - please specify in comments)

No but I was given compression stockings to wear

No I was not given anything

Don't know

Not applicable - not hospitalised

Other (please specify)

KLINEFELTER SYNDROME, COVID 19 and THROMBOEMBOLIC RISK

Question Title

* 1. Have you ever had a proven thrombo-embolic event (e.g. deep vein thrombosis (DVT) - blood clot in leg / pulmonary embolus (PE) - blood clot in lung)/ stroke )?

Question Title

* 2. When you had your thrombo-embolic event (DVT/PE/stroke) were you on any testosterone - enhancing therapy ?

Question Title

* 3. If you were on testosterone enhancing medication in Q2, how long were you on the medication before you had the DVT/PE/stroke?

Question Title

* 4. Were you made aware of the potentially increased risk of thrombo-embolic events in both Klinefelter Syndrome and in testosterone-enhancing medication?

Question Title

* 5. What is your age? Also in the Comments, please indicate how old you were when you had your first thromboembolic event (if applicable)

Question Title

* 6. What is your BMI (body mass index) - if unknown please state height & weight in comments. Also importantly please state any medical condition(s) and all medication in the comments

Question Title

* 7. Did you have a proven or suspected CoVID 19 infection?PLEASE NOTE THAT THERE IS CURRENTLY NO EVIDENCE THAT KS PATIENTS ARE AT HIGHER RISK OF COVID 19 THAN THE GENERAL POPULATION.

Question Title

* 8. If you answered YES to Q7, did you get admitted to hospital and/or intensive care and for how long?

Question Title

* 9. After you were suspected to have /diagnosed with CoVID 19 did you subsequently have a proven thrombo-embolic event (DVT/PE/stroke) ?

Question Title

* 10. If you were hospitalised, were you given injections or tablets to thin your blood to prevent risks of thrombo-embolic events (DVT/PE/stroke)?

* 7. Did you have a proven or suspected CoVID 19 infection?
PLEASE NOTE THAT THERE IS CURRENTLY NO EVIDENCE THAT KS PATIENTS ARE AT HIGHER RISK OF COVID 19 THAN THE GENERAL POPULATION.