KS / CHH survey 2 - Extra symptoms and treatment issues.

Question Title

* 1. Do you have any other family members with KS / CHH

No, as far as I know I am the only one in my family with this condition.

Yes, siblings or members of previous generations with the condition

Possibly but not in contact with all family members

Other (please specify)

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* 2. Have you been offered psychological support or counselling about KS / CHH since your diagnosis?

Yes, but did not take up the offer.

No, not offered and probably would not take up offer if available

Yes, already have support for other medical conditions

No, not offered but would take up offer if available

Other (please specify)

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* 3. Have you participated in any genetic studies?

Yes, but have never received any answer back

Yes, got a "negative" answer back

No, but would like to participate if results were sent back

No, have no interest in taking part in any genetic studies.

Other (please specify)

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* 4. Do you or your children have suspected or confirmed behavioural or
developmental problems in addition to delayed puberty

Autism spectrum disorder

Dyslexia

Attention Deficit Hyperactivity Disorder

Seizure disorders / epilepsy

Migraines

Obsessive compulsive disorder

Mirror movements of the hands

Problems with hand / eye coordination

Problems with sense of balance

Schizophrenia

Abnormal sleep patterns / insomnia

None of the above

No additional symptoms apparent apart from delayed puberty and / or anosmia

Other (please specify)

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* 5. Please rate this statement:

"When placed aside the lack of puberty and being infertile, the fact I have no sense of smell does not bother me at all."

Strongly agree

Agree

Neither agree nor disagree

Disagree

Strongly disagree

Not relevant - have a normal sense of smell

Other (please specify)

Question Title

* 6. Have you ever met anybody else with KS / CHH in person?

No, never knowingly met another person with KS / CHH

Yes, but only family members

Yes, only one other person with KS / CHH

Yes, between 2 and 5 other people with KS / CHH

Yes, between 6 and 10 other people with KS / CHH

Yes, over 10 people with KS / CHH

Other (please specify)

Question Title

* 7. Please rate this statement.

"The psychological issues raised from having KS / CHH have a greater impact on my life than the physical symptoms"

Strongly agree

Agree

Somewhat agree

Neither agree nor disagree

Somewhat disagree

Disagree

Strongly Disagree

Other (please specify)

Question Title

* 8. How have many people, other than medical professionals and
members of patient groups you told about your condition?

No one else. I have no wish to tell anybody I have this condition

Only my parents

Only my parents and close family

Less than 5 people, including family, friends and intimate partners

Between 5 and 10 people, including family, friends and intimate partners

Over 10 people

Happy to discuss or talk about the condition with anybody, including total strangers.

Other (please specify)

Question Title

* 9. What reasons, if any, have prevented you from seeking out fertility treatment.

The cost of medication is too high and it is not easily obtainable

I have no desire to have children of my own

Fertility treatments are unlikely to work due to other medical reasons

The risk of passing on the condition to any offspring

I have had successful fertility treatment in the past

Was told by doctors that fertility was impossible when diagnosed

Other (please specify)

Question Title

* 10. Have you had your Vitamin D levels checked as part of your routine check up?

No, as far as I am aware I have never had my Vitamin D levels checked.

No, but I take over the counter Vitamin D tablets.

Yes and I take over the counter Vitamin D tablets

Yes and I take prescribed Vitamin D type medication in capsule or injection form

Yes, I am prescribed Vitamin D but do not take the medication

Other (please specify)

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* 11. Have you ever had a bone density scan (DEXA / DXA) since being diagnosed? This does not include the wrist x-ray that is sometimes used in diagnosis.

Only once at diagnosis

Never had one, but aware of why they may be required

Never heard of this type of test and unsure why it might be required.

Have one every year

Have one every three years

Last one was between 3 and 5 years ago

Last one was between 6 and 10 years ago

Other (please specify)

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* 12. If a survey like this one was created that asked intimate details about sexual experience, orientation, penis size and other personal questions, would you
be happy to answer questions?

Yes, the overall results as a group of patients might be helpful

No, I have no wish to answer such questions

I see no benefit from knowing the answers to such questions

Other (please specify)

Question Title

* 1. Do you have any other family members with KS / CHH

Question Title

* 2. Have you been offered psychological support or counselling about KS / CHH since your diagnosis?

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* 3. Have you participated in any genetic studies?

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* 4. Do you or your children have suspected or confirmed behavioural or developmental problems in addition to delayed puberty

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* 5. Please rate this statement:"When placed aside the lack of puberty and being infertile, the fact I have no sense of smell does not bother me at all."

Question Title

* 6. Have you ever met anybody else with KS / CHH in person?

Question Title

* 7. Please rate this statement."The psychological issues raised from having KS / CHH have a greater impact on my life than the physical symptoms"

Question Title

* 8. How have many people, other than medical professionals and members of patient groups you told about your condition?

Question Title

* 9. What reasons, if any, have prevented you from seeking out fertility treatment.

Question Title

* 10. Have you had your Vitamin D levels checked as part of your routine check up?

Question Title

* 11. Have you ever had a bone density scan (DEXA / DXA) since being diagnosed? This does not include the wrist x-ray that is sometimes used in diagnosis.

Question Title

* 12. If a survey like this one was created that asked intimate details about sexual experience, orientation, penis size and other personal questions, would you be happy to answer questions?

* 4. Do you or your children have suspected or confirmed behavioural or
developmental problems in addition to delayed puberty

* 5. Please rate this statement:

"When placed aside the lack of puberty and being infertile, the fact I have no sense of smell does not bother me at all."

* 7. Please rate this statement.

"The psychological issues raised from having KS / CHH have a greater impact on my life than the physical symptoms"

* 8. How have many people, other than medical professionals and
members of patient groups you told about your condition?

* 12. If a survey like this one was created that asked intimate details about sexual experience, orientation, penis size and other personal questions, would you
be happy to answer questions?