KS / CHH survey 4 - Depression & emotional aspects.

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* 1. Do you or have you ever suffered depression which you directly relate to
KS / CHH

No, never had depressive episodes directly linked to my condition

Yes, have had depressive episodes in the past directly linked to my condition

Yes, have frequent and on-going depressive episodes directly linked to my condition

Yes, have depressive episodes but not directly related to KS / CHH

Do not wish to answer

Other (please specify)

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* 2. Have you ever been prescribed medication or undergone counselling for
depression in addition to regular hormone replacement therapy?
Tick all that apply.

On no medication at all. - Hormone replacement or anti-depression medication

On hormone replacement therapy only.

On anti-depression medication only.

On both hormone replacement therapy and anti-depression medication

Have had counselling sessions in the past

Undergoing counselling sessions at present

Would undergoing counselling if available

Have no need for counselling

Do not wish to answer

Other (please specify)

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* 3. Would you consider being off medication as being a major cause of
depression?

Tick any that apply.

No, my depressive episodes do not seem related to me being on treatment or not

Yes, I feel my depressive episodes are directly linked to whether I am on hormone replacement therapy or not.

No, I feel like I have never experienced depressive episodes related to my condition

Yes, I consider my depressive episodes can relate directly to my hormone levels while on treatment.

I have had less depressive episodes since I was diagnosed.

Do not wish to answer

Other (please specify)

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* 4. Self harm

I have considered but not experienced self harm in response to my experiences coping with KS / CHH

I have had episodes of self harm in the past in response to my experiences coping with KS / CHH

I have never considered or experienced self harm

I had considered self harm before diagnosis but not since

Choose not to answer

Other (please specify)

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* 5. What impact do patient groups on Facebook and other sites have on your
experience with KS / CHH.

Tick any that apply

Facebook groups are a good source of medical information on KS / CHH

Facebook groups are a good way of connecting with fellow patients but would not trust them for
medical information on KS / CHH

I am pleased the Facebook groups exist and I try to contribute as much as I can

I am pleased the Facebook groups exist but I do not feel any need to post anything.

The fact that I know that I am not alone with my condition is enough for me, I do not need to participate in the group I am
happy just to be a member.

Patient groups can have a negative influence on my experience by highlighting the worse aspects of the condition.

I wish more people who have had more positive experiences with KS / CHH would post in the Facebook groups.

Choose not to answer

Other (please specify)

Question Title

* 6. Which emotional problems would you directly link to having KS / CHH?

Tick all that apply.

Depression

Anxiety in talking to people at all times

Anxiety in talking to people in social situations or non-work related situations

Feeling isolated within a social group of friends or colleagues

Socially introverted

Bipolar disorder

Constant feeling of pessimism

Constant feeling of hopelessness

Dysphoria (but not specifically gender dysphoria)

Gender dysphoria

Choose not to answer

Other (please specify)

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* 7. Please rate this statement.

"I can not escape the fact I have KS / CHH. I am reminded of the fact I have
this condition every day and it has a major impact on my emotional
wellbeing."

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* 8. Which of these do you think are important in helping you deal with having
KS / CHH.

Tick all that apply and add your own suggestions.

Early diagnosis

Treatment starting in teenage years

Gaining correct and up to date information about the condition

Being able to communicate with fellow patients through social media

Being able to contact medical specialists with direct knowledge of KS / CHH treatment

Meeting fellow patients in person through patient meetings

Being able to access fertility treatment easily

Watching You Tube videos from fellow patients talking about their own experiences with the condition

Forming a relationship with a partner

Being confident to have sexual relations

Choose not to answer

Other (please specify)

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* 1. Do you or have you ever suffered depression which you directly relate toKS / CHH

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* 2. Have you ever been prescribed medication or undergone counselling for depression in addition to regular hormone replacement therapy?Tick all that apply.

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* 3. Would you consider being off medication as being a major cause of depression?Tick any that apply.

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* 4. Self harm

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* 5. What impact do patient groups on Facebook and other sites have on yourexperience with KS / CHH.Tick any that apply

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* 6. Which emotional problems would you directly link to having KS / CHH?Tick all that apply.

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* 7. Please rate this statement."I can not escape the fact I have KS / CHH. I am reminded of the fact I have this condition every day and it has a major impact on my emotional wellbeing."

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* 8. Which of these do you think are important in helping you deal with having KS / CHH.Tick all that apply and add your own suggestions.

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* 9. What one suggestion (if any) would you make that could make your life easier in dealing with KS / CHH.

* 1. Do you or have you ever suffered depression which you directly relate to
KS / CHH

* 2. Have you ever been prescribed medication or undergone counselling for
depression in addition to regular hormone replacement therapy?
Tick all that apply.

* 3. Would you consider being off medication as being a major cause of
depression?

Tick any that apply.

* 5. What impact do patient groups on Facebook and other sites have on your
experience with KS / CHH.

Tick any that apply

* 6. Which emotional problems would you directly link to having KS / CHH?

Tick all that apply.

* 7. Please rate this statement.

"I can not escape the fact I have KS / CHH. I am reminded of the fact I have
this condition every day and it has a major impact on my emotional
wellbeing."

* 8. Which of these do you think are important in helping you deal with having
KS / CHH.

Tick all that apply and add your own suggestions.

* 9. What one suggestion (if any) would you make that could make your life
easier in dealing with KS / CHH.