Teen Insight Mental Health Survey #2

This survey, like the last one, will continue to cover mental health. What is mental health? Quite simply, mental health refers to the well-being of your thoughts, emotions, and behavior.

Remember, your answers can only be viewed by ASF staff and anything with your name will not be shared with your parents or anyone else without your direct, written consent. This survey should only take approximately XXXX minutes of your time.

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* 1. Please type your first and last name.

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* 2. Have there been times when an aspect of living with Alport syndrome (such as hearing loss or medications/their side effects during school hours) has led to extra, unwanted attention?

Yes

I'm not sure

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* 3. Please write five adjectives you would use to describe your combined Alport syndrome management (doctor visits, daily medications, hearing aids etc.). Examples could include "easy," "time-consuming," "stressful" etc.

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* 4. In a 2018 meeting with the U.S. Food and Drug Administration, one teenage Alport patient noted a hard part of living with Alport syndrome is that there are daily reminders of having it, such as having to put in hearing aids. Do you agree?

Yes, I am reminded of my disease every day or almost every day

No, I am not reminded of my disease very often

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* 5. Geneally speaking, how much would you say your having Alport syndrome interferes with your daily life?

Not at all or minimally

Moderated

Significantly

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* 6. Other teens have reported the following feelings or experiences associated with their Alport diagnosis. Please select all of the following things you have experienced.

Alport has brought me closer to my family

I'm more empathetic toward others

I now know who my true friends are

I'm more mindful of my physical health

I've pursued new interests or hobbies

Depression or sad thoughts

Anxiety or stress

Less self-confidence

Feeling like I'm alone

Difficulty in relationships/friendships

Hopelessness

None of the above

Other (please specify)

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* 7. Some Alport teens have identified common, negative side effects of living with Alport syndrome. Please select all of the following that have applied to you.

I miss school or work more than I'd like to

My diagnosis causes stress for my family

I'm unable to participate in sports or other activities I enjoy

I don't have the same energy level as my friends

I have anxiety about my future

None of the above

Other (please specify)

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* 1. Please type your first and last name.

Question Title

* 2. Have there been times when an aspect of living with Alport syndrome (such as hearing loss or medications/their side effects during school hours) has led to extra, unwanted attention?

Question Title

* 3. Please write five adjectives you would use to describe your combined Alport syndrome management (doctor visits, daily medications, hearing aids etc.). Examples could include "easy," "time-consuming," "stressful" etc.

Question Title

* 4. In a 2018 meeting with the U.S. Food and Drug Administration, one teenage Alport patient noted a hard part of living with Alport syndrome is that there are daily reminders of having it, such as having to put in hearing aids. Do you agree?

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* 5. Geneally speaking, how much would you say your having Alport syndrome interferes with your daily life?

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* 6. Other teens have reported the following feelings or experiences associated with their Alport diagnosis. Please select all of the following things you have experienced.

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* 7. Some Alport teens have identified common, negative side effects of living with Alport syndrome. Please select all of the following that have applied to you.

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* 8. If could you could give one or two pieces of advice to a newly diagnosed child or teen, what would you say?