The Effects of Fragile X Syndrome that are Most Important to People with FXS and their Families/Caretakers

We Value Your Information

The intent of this survey is to find the aspects of Fragile X syndrome (FXS) that have the greatest impact on the lives of people with FXS and their families/caretakers. We are looking for people who have daily/near daily contact with the person with FXS. A person with FXS can also complete the survey.

A person can complete more than one survey – a survey should be completed for each of their children with FXS. (Each survey needs to be specific for only one person).

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* 1. Which of the following best describes you?

I have Fragile X syndrome

I am a family member or caretaker of someone with FXS

I am a professional who works with a person with FXS

Other (please specify)

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* 2. What is the age of the person with FXS with whom you have the connection? Or your age if you have FXS

Male: Birth to 5 years old

Female: Birth to 5 years old

Male: 6 to 12 years old

Female: 6 to 12 years old

Male: 13 to 21 years old

Female: 13 to 21 years old

Male: 22 years and older

Female: 22 years and older

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* 3. Check the five characteristics that have the greatest impact on the life of the person with FXS.

Prioritize 1, 2, 3, 4, 5.

Anxiety – anticipatory, e.g. of new/upcoming events

Auditory processing difficulties – being able to listen to instructions and react to them

Autism

Communication delays – initiation (asking for help) and social (turn-taking)

Hyperactivity

Learning or Intellectual disability (problems with abstract thinking, learning)

Memory – short term

Memory – long term

Motor delays (e.g. low muscle tone, poor fine motor skills, poor balance)

Motor stereotypes (hand-flapping, spinning around)

Perseveration – speech (repeating things over and over)

Seizures

Sensory processing difficulties

Short attention span

Social anxiety

Speech/Language delays – receptive (understanding spoken language)

Speech/Language delays – expressive (speaking spoken language)

Visual information processing difficulties

Other - Describe in the following question

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* 4. If you chose Other in previous question, please provide more information.

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* 5. Rank these three areas from one to three to the extent it affects the person’s daily life – with one having the greatest impact and three having the least impact:

Behavior

Intelligence

Physical abilities

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* 6. Check the top five areas of daily life the person with FXS is most affected by.

Prioritize 1, 2, 3, 4, 5.

Ability to learn academic skills/reading/math

Ability to take care of self-care skills/hygiene/cooking

Ability to speak/communicate

Ability to be left alone/spend time alone

Ability to control behavioral outbursts

Ability to attend and perform at school

Ability to find/maintain job

Ability to make and maintain friends

Ability to live independently

Ability to establish and maintain a relationship

Ability to be like other people his/her age.

Ability to attend events where there are a lot of people/noise

Willingness to go to new places

Willingness to travel/ go on vacation

Other – Describe in the following question

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* 7. If you chose Other in previous question, please provide more information.

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* 8. Which five specific aspects of daily living with FXS are the most challenging?

Prioritize 1, 2, 3, 4, 5.

Needing to make sure everything is “set” for the day – routine, visuals

Always thinking – how are things going, what do I need to do next? Needing to always be ‘one step’ ahead

Checking in/setting up daily programming – school, work, etc

Handling behaviors (negative) – tantrums, aggression, spitting, cussing

Hygiene – shower, toileting, hair cuts

Extra costs – therapies, medications, clothing, glasses, laundry

Extra time it takes to do everything

Doing activities with friends – both child’s and adult’s

Running errands – how many stops can I make? What environments could be hard/noisy?

Need for constant supervision

Food - Always hungry/wants to eat out

Person doesn’t understand directions/can only do one thing at a time

Sleeping

Doctor/dentist appointments – finding/attending

Medications – getting prescriptions/not running out/ making changes

Person is unable to tell you what he/she wants/needs

Finding respite

Worry about the future

Impact on non-affected family members

Other - Describe in the following question

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* 9. If you chose Other in previous question, please provide more information.

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* 10. List three of your favorite things about the person with FXS. (Or three things you like about yourself).

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* 11. What are the top three aspects of Fragile X syndrome that you would like to see a drug treatment address, list in order of preference, with the most important one first.

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* 1. Which of the following best describes you?

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* 2. What is the age of the person with FXS with whom you have the connection? Or your age if you have FXS

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* 3. Check the five characteristics that have the greatest impact on the life of the person with FXS.Prioritize 1, 2, 3, 4, 5.

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* 4. If you chose Other in previous question, please provide more information.

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* 5. Rank these three areas from one to three to the extent it affects the person’s daily life – with one having the greatest impact and three having the least impact:

Question Title

* 6. Check the top five areas of daily life the person with FXS is most affected by.Prioritize 1, 2, 3, 4, 5.

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* 7. If you chose Other in previous question, please provide more information.

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* 8. Which five specific aspects of daily living with FXS are the most challenging?Prioritize 1, 2, 3, 4, 5.

Question Title

* 9. If you chose Other in previous question, please provide more information.

Question Title

* 10. List three of your favorite things about the person with FXS. (Or three things you like about yourself).

Question Title

* 11. What are the top three aspects of Fragile X syndrome that you would like to see a drug treatment address, list in order of preference, with the most important one first.

* 3. Check the five characteristics that have the greatest impact on the life of the person with FXS.

Prioritize 1, 2, 3, 4, 5.

* 6. Check the top five areas of daily life the person with FXS is most affected by.

Prioritize 1, 2, 3, 4, 5.

* 8. Which five specific aspects of daily living with FXS are the most challenging?

Prioritize 1, 2, 3, 4, 5.