I agree to be re-contacted once, in approximately one year to answer some questions from this survey.* must provide value
Yes
No
Name (First and Last)* must provide value
Please enter your first and last name. Format: Jane Doe
Email* must provide value
Please enter your email.
Age (years) Please enter your age in years. Format: 45
Sex Female
Male
Please select your sex.
State of residence Alabama Alaska Arizona Arkansas California Colorado Connecticut Delaware Florida Georgia Hawaii Idaho Illinois Indiana Iowa Kansas Kentucky Louisiana Maine Maryland Massachusetts Michigan Minnesota Mississippi Missouri Montana Nebraska Nevada New Hampshire New Jersey New Mexico New York North Carolina North Dakota Ohio Oklahoma Oregon Pennsylvania Rhode Island South Carolina South Dakota Tennessee Texas Utah Vermont Virginia Washington West Virginia Wisconsin Wyoming
Please select the state that you currently reside in.
Zipcode* must provide value
Please enter your zipcode.
Race (of caregiver/parent filling out survey) American Indian/Alaskan Native
Asian
Black or African American
Native Hawaiian or other Pacific Islander
White
Other
Please select your race. Select all that apply.
Ethnicity (of caregiver/parent filling out survey) Hispanic or Latino
Not Hispanic or Latino
Please select your ethnicity.
Current Marital Status Married
Widowed
Divorced
Separated
Never Married
Please select the choice that best represents your current marital status
What is the highest degree or level of education that you have completed? Less than a high school diploma
High school diploma or equivalent
Associate's degree
Bachelor's degree
Master's degree
Doctorate or other professional degree (e.g. JD, MD)
Trade school
Please select the highest level of education that you have completed.
Which of the following best describes your employment status? Employed (Full time)
Employed (Part time)
Unemployed (Seeking employment)
Unemployed (Not seeking employment)
Retired
Student
Disabled
Please select the choice that best represents your current employment status.
What was the combined income of your household in 2018? Less than $25,000
$25,000 - $50,000
$50,000 - $100,000
$100,000 - $200,000
Greater than $200,000
Please select the choice that best represents the combined (you and other members of your household) household income in 2018.
What languages are spoken in your household? English
Spanish
Other
What languages are spoken in your household? Please select all that apply.
Other Language Spoken in Household Please enter the other languages spoken in your household. Please separate answers using a comma. Format (French, Italian)
Total number of children in household (including child with PWS) 1
2 - 4
More than 4
Please enter the total number of children in your household including your child(ren) with PWS.
Total number of children in the household with special healthcare needs (including child with PWS) 1
2 - 4
More than 4
Please select the number of children in your household with special healthcare needs including your child(ren) with PWS.
How old is your child with PWS? Please enter the age of your child with PWS. Format: if your child is 12, please enter 12 years. If your child is less than a year old, please enter the age in months, for example 6 months. Please be sure to include the unit of time (months or years) after the number.
What is your child's height in inches? How tall is your child with PWS? Example: If your child is 5 feet 0 inches, they are 60 inches tall. Format: 60
How much does your child weigh (pounds)? What is your child's weight in pounds? Format: 110
BMI View equation
Sex of child Female
Male
What is the sex of your child with PWS?
Race of child American Indian or Alaskan Native
Asian
Black or African American
Native Hawaiian or other Pacific Islander
White
Other
What is the race of your child with PWS? Please select all that apply.
Ethnicity of child Hispanic or Latino
Not Hispanic or Latino
What is the ethnicity of your child with PWS?
Select the state in which your child with PWS was born Alabama Alaska Arizona Arkansas California Colorado Connecticut Delaware Florida Georgia Hawaii Idaho Illinois Indiana Iowa Kansas Kentucky Louisiana Maine Maryland Massachusetts Michigan Minnesota Mississippi Missouri Montana Nebraska Nevada New Hampshire New Jersey New Mexico New York North Carolina North Dakota Ohio Oklahoma Oregon Pennsylvania Rhode Island South Carolina South Dakota Tennessee Texas Utah Vermont Virginia Washington West Virginia Wisconsin Wyoming
Please select the state that your child with PWS was born in.
Was your child admitted to the neonatal intensive care unit (NICU) immediately after birth? Yes
No
Please select whether your child was admitted to the NICU after birth.
Was your child admitted to the hospital or NICU within the first few months of life? Yes
No
At what age did your child receive their PWS diagnosis? 0 - 2 months
2 - 6 months
6 months - 1 year
1 year - 5 years
5+ years
Please select the age at which your child received a diagnosis of PWS.
At what age did your child with PWS start taking growth hormone? 0 -2 months
2 - 6 months
6 months - 1 year
1 year - 5 years
5+ years
My child has never taken growth hormone
Please select the age at which your child began taking human growth horman.
What type of provider diagnosed your child with PWS? Geneticist
Endocrinologist
Neonatologist
Other
Unsure
What type of medical provider diagnosed your child with PWS?
Once your child was diagnosed with PWS, were you offered any resources such as Prader Willi Syndrome Association (USA), Foundation for Prader-Willi Research, Parent Mentor, etc? Yes
No
What resource would have been helpful during the first year of your child's life? Prader-Willi Syndrome Association (USA)
Foundation for Prader-Willi Research
Parent Mentor
Other
Please select all that apply.
Please specify what additional resources would have been helpful to have during the first year after your child's diagnosis with PWS. If you travel to see a specialist for treatment of your child with PWS, what type of specialist do you see? Endocrinologist
Orthopedist
Geneticist
Pulmonologist
Sleep Neurologist
Dietician
Other
Please select all that apply.
When your family travels to see a specialist for PWS, how far do you travel round trip? 0 - 100 miles
100 - 500 miles
500+ miles
How often does your family typically travel to see a PWS specialist? Annually
Bi-annually
Quarterly
Monthly
Other
Do you feel you have EASY access to the specialists your child with PWS needs? Yes
No
Unsure
If you travel to see a specialist, what is the approximate cost of the visit (Including travel, missed wages, hotel stay, and food)?
If over $600 dollars, please place the scale at $600
Is the time you take off from work to attend appointments with PWS specialists considered unpaid time? Definitely Probably Possibly Probably Not Definitely Not In the past year, how many times did you miss an appointment to the PWS specialist due to the cost of travel? Never 1 -2 times 3 - 4 times Greater than 4 times Did your family receive information on supplements from a healthcare provider while in the hospital? Yes No What supplements did you receive information about? L-Carnitine Fish Oil CoQ10 Other
Please specify the other supplement you received information about? Please enter the other supplements that you received information about. Please separate answers with a comma. Format: Fish oil, CoQ10
Did a dietician or pediatrician provide you with information on best dietary practices for your newborn with PWS? Yes
No
If a telehealth visit with your PWS specialist was available as an option, would you be interested in participating? Yes
No
What is your interest in meeting with your child's primary care provider over video? Extremely interested
Very interested
Moderately interested
Slightly interested
Not interested at all
Please list reasons why you are interested in participating in telehealth visits with your PWS specialists.
Do you have concerns over seeing your child's primary care provider for PWS over video? Yes
No
Unsure
What are your concerns due to? Worry that quality of care will suffer
Lack of access to internet or means to participate in telehealth
Worry about privacy of telehealth visits
Other
Please select all that apply.
Please specify your other concerns about participating in telehealth.
In the past 7 days: With no trouble
With a little trouble
With some trouble
With a lot of trouble
Not able to do
In the past 7 days: With no trouble
With a little trouble
With some trouble
With a lot of trouble
Not able to do
In the past 7 days: With no trouble
With a little trouble
With some trouble
With a lot of trouble
Not able to do
In the past 7 days: Never
Almost never
Sometimes
Often
Almost Always
In the past 7 days: Never
Almost never
Sometimes
Often
Almost Always
In the past 7 days: Never
Almost never
Sometimes
Often
Almost Always
In the past 7 days: Never
Almost never
Sometimes
Often
Almost Always
In the past 7 days: Never
Almost never
Sometimes
Often
Almost Always
In the past 7 days: Never
Almost never
Sometimes
Often
Almost Always
In the past 7 days: Never
Almost never
Sometimes
Often
Almost Always
In the past 7 days: Never
Almost never
Sometimes
Often
Almost Always
In the past 7 days: Never
Almost never
Sometimes
Often
Almost Always
In the past 7 days: Never
Almost never
Sometimes
Often
Almost Always
In the past 7 days: Never
Almost never
Sometimes
Often
Almost Always
In the past 7 days: Never
Almost never
Sometimes
Often
Almost Always
In the past 7 days: Never
Almost never
Sometimes
Often
Almost Always
In the past 7 days: Never
Almost never
Sometimes
Often
Almost Always
In the past 7 days: Never
Almost never
Sometimes
Often
Almost Always
In the past 7 days: Never
Almost never
Sometimes
Often
Almost Always
In the past 7 days: Never
Almost never
Sometimes
Often
Almost Always
In the past 7 days: Never
Almost never
Sometimes
Often
Almost Always
In the past 7 days: Never
Almost never
Sometimes
Often
Almost Always
In the past 7 days: Never
Almost never
Sometimes
Often
Almost Always
In the past 7 days: Never
Almost never
Sometimes
Often
Almost Always
In the past 7 days: Far above average
Somewhat about average
Average
Somewhat below average
Far below average
Over the last two weeks, how often have you been bothered by the following problems in regards to healthcare related travel for your child with PWS? Not at all sure
Several days
Over half of the days
Nearly everyday
Over the last two weeks, how often have you been bothered by the following problems in regards to healthcare related travel for your child with PWS? Not at all sure
Several days
Over half the days
Nearly everyday
Over the last two weeks, how often have you been bothered by the following problems in regards to healthcare related travel for your child with PWS? Not at all sure
Several days
Over half the days
Nearly everyday
Over the last two weeks, how often have you been bothered by the following problems in regards to healthcare related travel for your child with PWS? Not at all sure
Several days
Over half the days
Nearly everyday
Over the last two weeks, how often have you been bothered by the following problems in regards to healthcare related travel for your child with PWS? Not at all sure
Several days
Over half the days
Nearly everyday
Over the last two weeks, how often have you been bothered by the following problems in regards to healthcare related travel for your child with PWS? Not at all sure
Several days
Over half the days
Nearly everyday
Over the last two weeks, how often have you been bothered by the following problems in regards to healthcare related travel for your child with PWS? Not at all sure
Several days
Over half the days
Nearly everyday
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