Research Scenario for Early Brain Injury

It is estimated that this survey will take you 3-5mins to complete

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* 1. Are you answering these questions

For your child

For yourself

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* 2. Which of the following best describes the highest level of education you have completed

Didn't graduate from high school

High school diploma or GED

Technical or vocational degree

College degree

Advanced degree

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* 3. What best describes your current employment status

Working full-time

Working part-time

Retired

Not currently employed

Not working because of a temporary or permanent disability

For the questions below please consider the following scenario

Your child or yourself had a problem at birth that possibly caused a SMALL lack of oxygen and blood flow to the brain (medical term: MILD hypoxic ischemic encephalopathy or HIE).

Background:

Currently there is very little treatment for mild HIE. A treatment for moderate to severe HIE is hypothermia (body cooling). Body cooling is relatively safe and easy to implement and has shown to decrease the chance of death and disability by 25% as well as improve neurological outcomes at 5-6 years.

The benefit or harm of body cooling for mild HIE is unknown. Because so little is known about this, doctors base whether they treat mild HIE with body cooling on protocols and procedures at their hospital. Additionally, the following statements are true for treatment of mild HIE with body cooling.

- May or may not make a difference to long-term outcomes.
- May depend on the specific conditions at each hospital.
- May have some negative side-effects.

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* 4. If the risks and possible benefits of cooling were perfectly equal, how would you want researchers to study this question?

I would want the treatment to be decided randomly (This is a randomized controlled trial, treatment is chosen as if by the flip of a coin).

I would want the treatment to be decided by the guidelines of the regional hospitals. (This is a comparative effectiveness trial, where different hospitals results are compared to each other)

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* 5. Let’s consider the possible, but not confirmed BENEFITS of the body cooling treatment. On the scale below give them a score for how important you think they are.

	1 (Not Important)	2	3	4	5	6	7	8	9	10 (Very Important)
Prevent changes visible on MRI of the brain by discharge from the hospital	Prevent changes visible on MRI of the brain by discharge from the hospital 1 (Not Important)	Prevent changes visible on MRI of the brain by discharge from the hospital 2	Prevent changes visible on MRI of the brain by discharge from the hospital 3	Prevent changes visible on MRI of the brain by discharge from the hospital 4	Prevent changes visible on MRI of the brain by discharge from the hospital 5	Prevent changes visible on MRI of the brain by discharge from the hospital 6	Prevent changes visible on MRI of the brain by discharge from the hospital 7	Prevent changes visible on MRI of the brain by discharge from the hospital 8	Prevent changes visible on MRI of the brain by discharge from the hospital 9	Prevent changes visible on MRI of the brain by discharge from the hospital 10 (Very Important)
Prevent neurological deficits at the time of going home from the hospital (reflexes, irritability, sensing the world)	Prevent neurological deficits at the time of going home from the hospital (reflexes, irritability, sensing the world) 1 (Not Important)	Prevent neurological deficits at the time of going home from the hospital (reflexes, irritability, sensing the world) 2	Prevent neurological deficits at the time of going home from the hospital (reflexes, irritability, sensing the world) 3	Prevent neurological deficits at the time of going home from the hospital (reflexes, irritability, sensing the world) 4	Prevent neurological deficits at the time of going home from the hospital (reflexes, irritability, sensing the world) 5	Prevent neurological deficits at the time of going home from the hospital (reflexes, irritability, sensing the world) 6	Prevent neurological deficits at the time of going home from the hospital (reflexes, irritability, sensing the world) 7	Prevent neurological deficits at the time of going home from the hospital (reflexes, irritability, sensing the world) 8	Prevent neurological deficits at the time of going home from the hospital (reflexes, irritability, sensing the world) 9	Prevent neurological deficits at the time of going home from the hospital (reflexes, irritability, sensing the world) 10 (Very Important)
See a small improvement in language and thinking ability by 2 years of age	See a small improvement in language and thinking ability by 2 years of age 1 (Not Important)	See a small improvement in language and thinking ability by 2 years of age 2	See a small improvement in language and thinking ability by 2 years of age 3	See a small improvement in language and thinking ability by 2 years of age 4	See a small improvement in language and thinking ability by 2 years of age 5	See a small improvement in language and thinking ability by 2 years of age 6	See a small improvement in language and thinking ability by 2 years of age 7	See a small improvement in language and thinking ability by 2 years of age 8	See a small improvement in language and thinking ability by 2 years of age 9	See a small improvement in language and thinking ability by 2 years of age 10 (Very Important)
See a small improvement in behavioral and mood problems by 2 years of age	See a small improvement in behavioral and mood problems by 2 years of age 1 (Not Important)	See a small improvement in behavioral and mood problems by 2 years of age 2	See a small improvement in behavioral and mood problems by 2 years of age 3	See a small improvement in behavioral and mood problems by 2 years of age 4	See a small improvement in behavioral and mood problems by 2 years of age 5	See a small improvement in behavioral and mood problems by 2 years of age 6	See a small improvement in behavioral and mood problems by 2 years of age 7	See a small improvement in behavioral and mood problems by 2 years of age 8	See a small improvement in behavioral and mood problems by 2 years of age 9	See a small improvement in behavioral and mood problems by 2 years of age 10 (Very Important)
See a small improvement in school-age attention, memory behavioral, mood or learning problems	See a small improvement in school-age attention, memory behavioral, mood or learning problems 1 (Not Important)	See a small improvement in school-age attention, memory behavioral, mood or learning problems 2	See a small improvement in school-age attention, memory behavioral, mood or learning problems 3	See a small improvement in school-age attention, memory behavioral, mood or learning problems 4	See a small improvement in school-age attention, memory behavioral, mood or learning problems 5	See a small improvement in school-age attention, memory behavioral, mood or learning problems 6	See a small improvement in school-age attention, memory behavioral, mood or learning problems 7	See a small improvement in school-age attention, memory behavioral, mood or learning problems 8	See a small improvement in school-age attention, memory behavioral, mood or learning problems 9	See a small improvement in school-age attention, memory behavioral, mood or learning problems 10 (Very Important)

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* 6. Let’s consider the possible side effects of the body cooling treatment. How would these factors influence your decision for treatment.

	1 (Not Important)	2	3	4	5	6	7	8	9	10 (Very Important)
Being separated from parents at birth for 3 days	Being separated from parents at birth for 3 days 1 (Not Important)	Being separated from parents at birth for 3 days 2	Being separated from parents at birth for 3 days 3	Being separated from parents at birth for 3 days 4	Being separated from parents at birth for 3 days 5	Being separated from parents at birth for 3 days 6	Being separated from parents at birth for 3 days 7	Being separated from parents at birth for 3 days 8	Being separated from parents at birth for 3 days 9	Being separated from parents at birth for 3 days 10 (Very Important)
Staying in an intensive care unit with an IV line that goes through a major blood vessel to the heart for a minimum of 3 days after birth	Staying in an intensive care unit with an IV line that goes through a major blood vessel to the heart for a minimum of 3 days after birth 1 (Not Important)	Staying in an intensive care unit with an IV line that goes through a major blood vessel to the heart for a minimum of 3 days after birth 2	Staying in an intensive care unit with an IV line that goes through a major blood vessel to the heart for a minimum of 3 days after birth 3	Staying in an intensive care unit with an IV line that goes through a major blood vessel to the heart for a minimum of 3 days after birth 4	Staying in an intensive care unit with an IV line that goes through a major blood vessel to the heart for a minimum of 3 days after birth 5	Staying in an intensive care unit with an IV line that goes through a major blood vessel to the heart for a minimum of 3 days after birth 6	Staying in an intensive care unit with an IV line that goes through a major blood vessel to the heart for a minimum of 3 days after birth 7	Staying in an intensive care unit with an IV line that goes through a major blood vessel to the heart for a minimum of 3 days after birth 8	Staying in an intensive care unit with an IV line that goes through a major blood vessel to the heart for a minimum of 3 days after birth 9	Staying in an intensive care unit with an IV line that goes through a major blood vessel to the heart for a minimum of 3 days after birth 10 (Very Important)
Not being able to eat or breast feed for the first 3-4 days after birth	Not being able to eat or breast feed for the first 3-4 days after birth 1 (Not Important)	Not being able to eat or breast feed for the first 3-4 days after birth 2	Not being able to eat or breast feed for the first 3-4 days after birth 3	Not being able to eat or breast feed for the first 3-4 days after birth 4	Not being able to eat or breast feed for the first 3-4 days after birth 5	Not being able to eat or breast feed for the first 3-4 days after birth 6	Not being able to eat or breast feed for the first 3-4 days after birth 7	Not being able to eat or breast feed for the first 3-4 days after birth 8	Not being able to eat or breast feed for the first 3-4 days after birth 9	Not being able to eat or breast feed for the first 3-4 days after birth 10 (Very Important)
Shivering for 3 days that may require sedative medicines	Shivering for 3 days that may require sedative medicines 1 (Not Important)	Shivering for 3 days that may require sedative medicines 2	Shivering for 3 days that may require sedative medicines 3	Shivering for 3 days that may require sedative medicines 4	Shivering for 3 days that may require sedative medicines 5	Shivering for 3 days that may require sedative medicines 6	Shivering for 3 days that may require sedative medicines 7	Shivering for 3 days that may require sedative medicines 8	Shivering for 3 days that may require sedative medicines 9	Shivering for 3 days that may require sedative medicines 10 (Very Important)
Possible transient changes in blood clotting and bleeding	Possible transient changes in blood clotting and bleeding 1 (Not Important)	Possible transient changes in blood clotting and bleeding 2	Possible transient changes in blood clotting and bleeding 3	Possible transient changes in blood clotting and bleeding 4	Possible transient changes in blood clotting and bleeding 5	Possible transient changes in blood clotting and bleeding 6	Possible transient changes in blood clotting and bleeding 7	Possible transient changes in blood clotting and bleeding 8	Possible transient changes in blood clotting and bleeding 9	Possible transient changes in blood clotting and bleeding 10 (Very Important)
Possible delayed or unsuccessful breastfeeding	Possible delayed or unsuccessful breastfeeding 1 (Not Important)	Possible delayed or unsuccessful breastfeeding 2	Possible delayed or unsuccessful breastfeeding 3	Possible delayed or unsuccessful breastfeeding 4	Possible delayed or unsuccessful breastfeeding 5	Possible delayed or unsuccessful breastfeeding 6	Possible delayed or unsuccessful breastfeeding 7	Possible delayed or unsuccessful breastfeeding 8	Possible delayed or unsuccessful breastfeeding 9	Possible delayed or unsuccessful breastfeeding 10 (Very Important)
Possible effects on mother-infant relationships and bonding	Possible effects on mother-infant relationships and bonding 1 (Not Important)	Possible effects on mother-infant relationships and bonding 2	Possible effects on mother-infant relationships and bonding 3	Possible effects on mother-infant relationships and bonding 4	Possible effects on mother-infant relationships and bonding 5	Possible effects on mother-infant relationships and bonding 6	Possible effects on mother-infant relationships and bonding 7	Possible effects on mother-infant relationships and bonding 8	Possible effects on mother-infant relationships and bonding 9	Possible effects on mother-infant relationships and bonding 10 (Very Important)

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* 7. Given the above list of risks and benefits, give us your opinion the scale below:

The benefits completely outweigh the risks

The benefits and risk seem equal to me

The risks completely outweigh the benefits

Clear

i We adjusted the number you entered based on the slider’s scale.

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* 8. In your opinion what percentage of improvement in language and thinking ability by 2 years of age is worth the risk of treatment for mild HIE with body cooling.

1% (any small improvement is worth the risks)

10%