Questionnaire concerning availability of oral and transdermal estradiol, and progestogen preparations (P&Pc).
Prepared on behalf of ESPE Turner Syndrome Working Group.

Patient & Parents Part C

We truly appreciate your involvement. The purpose of this questionnaire is to establish what kind of oestrogen and progesterone were offered to you for puberty induction and what is your private opinion concerning this issue. The questionnaire responses will be reviewed by the TSWG Steering Committee Members.

Question Title

* 1.
Your participation is voluntary and you are under no obligation to take part in this survey. By anonymously completing this questionnaire and submitting the information, you agree for it to be used for the purposes described.

Yes, I agree

Question Title

* 2. In what country do you live?

Question Title

* 3.
Please indicate the term which best describes you as a Responder (you may select more than one)

Patient (I complete the survey myself)

Patient needs help in completing this survey

Parent(s) of TS patient

Member of TS organisation

Other (please specify)

Question Title

* 4.
How old are you?/ How old is your daughter with TS?

Under 18

18-24

25-34

35-44

45-54

55-64

65+

Question Title

* 5.
At what age the diagnosis of TS was done?

during pregnacy and was confirmed after a birth

in the first year of life

before 3rd year of life

between 3-6 years of age

between 7-12 years of age

between 13-15 years of age

after 15 years of age

I do not know

I do not remember

Question Title

* 6.
At what age did you/your daughter start estrogen therapy?

before 10 years

between 10 and 12 years

between 12 and 14 years

between 14 and 16 years

between 16 and 18 years

after 18 years

I do not remember

Other (please specify)

Question Title

* 7.
What form of estrogens was offered to you for pubertal induction / in the first 4 years of therapy? (You can mark more than one answer)

natural estradiol (tablets, orally)

transdermal estradiol in patch (skin patch)

transdermal estradiol in gel (skin gel)

ethinyl estradiol (tablets, orally)

depot estrediol (intramuscularly)

I do not remember

Other (please specify)

Question Title

* 8. How long did pubertal induction take? (pubertal induction = time of gradual increase of estrogen dose until adult dosing is reached)

less than 1 year

1-2 years

2-3 years

3-4 years

more than 4 years

I do not remember

Other (please specify)

Question Title

* 9.
If you remember the estrogen preparation(s) used for your/ or your child's puberty induction, please write its/their name(s)

Question Title

* 10.
If you remember the progesterone preparation(s) used for your/ or your child's puberty induction, please write its/their name(s)

Question Title

* 11.
Based on your own experience what form of estrogens would you recommend for pubertal induction / in the first 4 years of therapy? (You can mark more than one answer)

natural estradiol (tablets, orally)

transdermal estradiol in patch (skin patch)

transdermal estradiol in gel (skin gel)

ethinyl estradiol (tablets, orally)

depot estrediol (intramuscularly)

I do not know

All forms of estrogen therapy could be recommended

Other (please specify)

Question Title

* 12.
Why do you recommend this form of estrogen for puberty induction? (you can mark more than one answer)

easier to use

easier to get

cheaper

more physiological (mimic natural estrogens)

I have used it and I like it

doctor(s) recommended this form

I am not sure/ I do not know

Other (please specify)

Question Title

* 13.
Were you happy with your breast development after puberty induction? (3-4 years after of therapy start)

Yes

I do not remember

I do not know

Other (please specify)

Question Title

* 14.
Did you/your daughter with TS have any problems during puberty induction? (you can mark more than one answer)

No, I did not

Yes, it was difficult to follow the treatment regimen, I did not remember about my medicine.

Yes, it was difficult to follow the treatment regimen, I felt bad using prescribed medicine.

Yes, I had irregular menstrual bleeding.

Yes, I gained weight / I stared to be overweight

Yes, I had mood swings.

Yes, I had local side affects (itching, redness) after transdermal estradiol preparation (skin patches, gel)

I do not know

I do not remember

Other (please specify)

Question Title

* 15.
Do you have any advice for younger girls about to start their puberty?

No, I do not

Yes (please specify)

Questionnaire concerning availability of oral and transdermal estradiol, and progestogen preparations (P&Pc). Prepared on behalf of ESPE Turner Syndrome Working Group.

Patient & Parents Part C

Question Title

* 1. Your participation is voluntary and you are under no obligation to take part in this survey. By anonymously completing this questionnaire and submitting the information, you agree for it to be used for the purposes described.

Question Title

* 2. In what country do you live?

Question Title

* 3. Please indicate the term which best describes you as a Responder (you may select more than one)

Question Title

* 4. How old are you?/ How old is your daughter with TS?

Question Title

* 5. At what age the diagnosis of TS was done?

Question Title

* 6. At what age did you/your daughter start estrogen therapy?

Question Title

* 7. What form of estrogens was offered to you for pubertal induction / in the first 4 years of therapy? (You can mark more than one answer)

Question Title

* 8. How long did pubertal induction take? (pubertal induction = time of gradual increase of estrogen dose until adult dosing is reached)

Question Title

* 9. If you remember the estrogen preparation(s) used for your/ or your child's puberty induction, please write its/their name(s)

Question Title

* 10. If you remember the progesterone preparation(s) used for your/ or your child's puberty induction, please write its/their name(s)

Question Title

* 11. Based on your own experience what form of estrogens would you recommend for pubertal induction / in the first 4 years of therapy? (You can mark more than one answer)

Question Title

* 12. Why do you recommend this form of estrogen for puberty induction? (you can mark more than one answer)

Question Title

* 13. Were you happy with your breast development after puberty induction? (3-4 years after of therapy start)

Question Title

* 14. Did you/your daughter with TS have any problems during puberty induction? (you can mark more than one answer)

Question Title

* 15. Do you have any advice for younger girls about to start their puberty?

Questionnaire concerning availability of oral and transdermal estradiol, and progestogen preparations (P&Pc).
Prepared on behalf of ESPE Turner Syndrome Working Group.

* 1.
Your participation is voluntary and you are under no obligation to take part in this survey. By anonymously completing this questionnaire and submitting the information, you agree for it to be used for the purposes described.

* 3.
Please indicate the term which best describes you as a Responder (you may select more than one)

* 4.
How old are you?/ How old is your daughter with TS?

* 5.
At what age the diagnosis of TS was done?

* 6.
At what age did you/your daughter start estrogen therapy?

* 7.
What form of estrogens was offered to you for pubertal induction / in the first 4 years of therapy? (You can mark more than one answer)

* 9.
If you remember the estrogen preparation(s) used for your/ or your child's puberty induction, please write its/their name(s)

* 10.
If you remember the progesterone preparation(s) used for your/ or your child's puberty induction, please write its/their name(s)

* 11.
Based on your own experience what form of estrogens would you recommend for pubertal induction / in the first 4 years of therapy? (You can mark more than one answer)

* 12.
Why do you recommend this form of estrogen for puberty induction? (you can mark more than one answer)

* 13.
Were you happy with your breast development after puberty induction? (3-4 years after of therapy start)

* 14.
Did you/your daughter with TS have any problems during puberty induction? (you can mark more than one answer)

* 15.
Do you have any advice for younger girls about to start their puberty?