The code block below illustrates how one might use # and // as comments in your logic and calculations.

# Text can be put here to explain what the logic/calculation does and why.
if ([field1] = '1' and [field2] > 7,

	// This comment can explain what the next line does.
	[score] * [factor],

	// Return '0' if the condition is False.
	0
)

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Esophageal Atresia / Tracheo-Esophageal Fistula Transition of Care Survey

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Thank you for participating in this study of children growing up after surgical repair of Esophageal Atresia (EA) and Tracheo-Esophageal Fistula (TEF). More information about this survey is available in this document.

Please do not complete this survey more than once. If you have previously received an invitation to complete the Esophageal Atresia / Tracheo-Esophageal Fistula Transition of Care Survey, do not complete a second survey. The survey refers to “the child” to refer to a baby, child or adult who was born with EA or TEF..

Thank you!

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Which Group referred you to this survey?

* must provide value

Bridging the Gap of EA/TEF (Facebook Group)

EA/TEF Family Support Connection (eatef.org)

Federation of Esophageal Atresia and Tracheo-Esophageal Fistula Support Groups (we-are-eat.org)

Tracheo-Oesophageal Fistula Support (tofs.org.uk)

Born Unable to Swallow (www.birth-defect.org)

How are you related to the patient with esophageal atresia / tracheo-esophageal fistula?

* must provide value

I am the parent or guardian of the patient.

I am the patient

In which country does the child currently live?

* must provide value

In which country do you currently live?

* must provide value

In which state does the child currently live?

* must provide value

In which state do you currently live?

* must provide value

How old was the child at the time of diagnosis (in months)?

* must provide value

How old were you at the time of diagnosis (in months)?

* must provide value

How old is the child now (in years)?

* must provide value

Please give your child's age in months:

* must provide value

How old are you now (in years)?

* must provide value

What is the child's race?

* must provide value

Asian / Pacific Islander

Black

Hispanic / Latino

Native American / Indigenous

White / Caucasian

Other

Prefer not to answer

Race

* must provide value

Asian / Pacific Islander

Black

Hispanic / Latino

Native American / Indigenous

White / Caucasian

Other

Prefer not to answer

How is the child's health care paid for?

* must provide value

Self-pay, out of pocket, with or without family or community support

Private insurance (patient's policy)

Private insurance (parent's policy)

State assistance or charity hospital care

National health insurance program

Other source

How is your health care paid for?

* must provide value

Self-pay, out of pocket, with or without family or community support

Private insurance (patient's policy)

Private insurance (parent's policy)

State assistance or charity hospital care

National health insurance program

Other source

Which type of problem with the esophagus did the child originally have?

* must provide value

Gap in the esophagus only ("pure" atresia)

Gap in the esophagus with a connection to the windpipe or trachea (atresia with tracheo-esophageal fistula)

I'm not sure

Which type of problem with the esophagus did you originally have?

* must provide value

Gap in the esophagus only ("pure" atresia)

Gap in the esophagus with a connection to the windpipe or trachea (atresia with tracheo-esophageal fistula)

I'm not sure

What other problems were found at or near the time of birth? [select all that apply]

* must provide value

Problems with the bones of the back (vertebrae or sacrum)

Problems with the bones of the hand or arm

Other gaps in the intestine or colon

Problems with the baby's bottom (imperforate anus) or connection of the colon to the vagina or the bladder (rectal fistula)

Problems with the heart

Problems with the kidneys

Prematurity (baby born before 37 weeks of pregnancy)

Other problems

At what type of hospital was the first surgery performed?

* must provide value

Pediatric Specialty Hospital

Adult Hospital

Pediatric Unit within an Adult Hospital

I'm not sure

What type of surgeon performed the first operation?

* must provide value

Pediatric General Surgeon

Thoracic or Cardiothoracic Surgeon

General Surgeon (treats mainly adults)

I'm not sure

The first surgery that was performed:

* must provide value

did not repair the esophagus; a feeding tube was placed in the stomach (gastrostomy)

did not repair the esophagus; the ends of the esophagus were brought closer together, but not connected.

repaired the esophagus

Something else was done

I'm not sure

Has the esophagus been repaired (both ends connected to each other)?

Yes

No

When the esophagus was repaired, which method was used?

* must provide value

Primary repair: the two ends of the esophagus were directly connected

Interposition repair: part of the stomach, bowel or colon was used to bridge the gap in the esophagus

Something else was done

I'm not sure

When the esophagus was repaired, what kind of surgery was performed?

* must provide value

Minimally Invasive (thoracoscopic): using multiple small incisions in the chest

Open (thoracotomy): single large incision in the chest

I'm not sure

How old was the child at the time the esophagus was repaired?

* must provide value

One week old or less

More than one week, but less than one month old

Between one and six months old

More than six months old

I'm not sure

How old were you when the esophagus was repaired?

* must provide value

One week old or less

More than one week, but less than one month old

Between one and six months old

More than six months old

I'm not sure

Problems that occurred after the esophagus was repaired (select all that apply):

* must provide value

Leak where the esophagus was repaired

Severe narrowing (stricture) where the esophagus was repaired

Breathing problems related to the windpipe (tracheomalacia)

Reflux that required medicine or surgery

Food getting stuck because of poor esophagus function (dysmotility)

Was any additional surgery required (for the esophagus or any other reason)?

* must provide value

Yes

No

One week old or less

More than one week, but less than one month old

Between one and six months old

More than six months, but less than one year old

One to two years old

More than two years old

I'm not sure

Placement of a feeding tube in the stomach (gastrostomy) or small bowel (jejunostomy)

Heart surgery, such as repair of a ventricular septal defect

Operation to repair the esophagus a second time

Fundoplication or "Nissen" (stomach surgery for reflux)

Repair of anorectal malformation (ARM), such as cloaca, imperforate anus , fistula connecting the bowel with the bladder, vagina or skin

Release of tethered spinal cord

Operations on the extremities, such as repair of club foot, release of contracture, etc.

Something else was done

Once

Twice

Three or more times

Endoscopy (camera study to look at the esophagus)

Dilation of the esophagus

Placement / replacement of a feeding tube

Removal of food stuck in the esophagus

Surgery to close the site where a g-tube was removed

Any procedures that are currently planned (select all that apply)

Endoscopy (camera study to look at the esophagus)

Dilation of the esophagus

Replacement of a feeding tube

Follow up procedures for other problems (heart, anorectal malformation, etc.)

Other

Please specify other procedure(s) that are currently planned:

* must provide value

Kinds of feeding were taken before leaving the hospital (select all that apply):

Breast milk or formula by nasoenteric (NG or through-the-nose) tube

Breast milk or formula by gastrostomy (G) tube

Breast milk or formula by mouth

Other

Please specify other nutrition that was taken:

* must provide value

Kinds of nutrition is taken presently (select all that apply):

Tube feeding

Liquids by mouth

Puree / thick liquid by mouth

Solid foods cut into small pieces / transitional foods by mouth

Solid food by mouth

0-24%

25-49%

50-74%

75-100%

Tube feeding

Breast milk, formula taken by mouth

Other foods taken by mouth

Other source

Pediatric Specialist (Treats Mostly Children)

Adult Provider (Treats Mostly Adults)

Surgeon

Ear, Nose and Throat (ENT doctor)

Gastroenterologist (GI doctor)

Pulmonologist (lung doctor)

Speech or Occupational Therapist

Nutritionist

Distance traveled to be seen by Surgeon (miles):

Change the slider above to set a response

Approximately how often is the child seen by the surgeon?

Every six months Once each year Less than once each year As needed

Approximately how often are you seen by the surgeon?

Every six months Once each year Less than once each year As needed

Distance traveled to be seen by ENT Doctor (miles):

Change the slider above to set a response

Distance traveled to be seen by GI Doctor (miles):

Change the slider above to set a response

Distance traveled to be seen by Lung Doctor (miles):

Change the slider above to set a response

Was it necessary to relocate in order for the child to continue to receive necessary treatment?

* must provide value

Yes

No

Was it necessary to relocate in order for you to continue to receive necessary treatment?

* must provide value

Yes

No

Counseling and Education

Scheduled Check-Ups

Transition to Adult Provider

Reflux

Bronchoscopy (camera studies) to look for airway problems

Endoscopy (camera studies) to look for narrowing or blockage

Endoscopy (camera studies) to look for damage to the esophagus

Long term planning of care for feeding and nutrition

Long term planning of care for surgical care

Long term planning for other anomalies (heart, kidney, anorectal malformation, etc.)

Have any doctors recommended scheduled endoscopy (camera studies), and if so, at what age would this begin?

Not recommended

Younger than 5 years

5-10 years old

11-15 years old

Older than 15 years

Can you describe the plan for transition of care to an Adult Provider?

Yes

No

Please briefly describe the plan for transition to Adult Provider(s)

Has the child been turned away when seeking care from an Adult Provider (directed to a Pediatric Specialist)?

Yes

No

I'm not sure

Have you been turned away when seeking care from an Adult Provider (directed to a Pediatric Specialist)?

Yes

No

I'm not sure

Please briefly describe the reason or circumstances when turned away from seeking care from an Adult Provider:

Have you encountered difficulty with any of the following when attempting to transition care to an Adult Provider?

Finding a physician comfortable with the medical problem(s)

Transferring information from pediatric to adult provider

Arranging needed procedures and related follow-up

Other challenge(s)

Please briefly describe any other challenges encountered when transitioning to the care to an Adult Provider:

Please briefly describe any specific help that might be offered to make transition to Adult Provider care easier:

Which of the following do you prefer at this time?

Remaining in a pediatric health care environment

Transitioning to an adult health care environment

Not sure

Pediatric health care environment

Adult health care environment

Convenient location

Convenient scheduling

Sensitivity to special needs

Clinical expertise

Communication between doctors and teams

Established relationships

Sustainability with increasing age

Other advantage(s)

Please briefly describe other advantages of the Pediatric health care environment:

Please briefly describe other advantages of the Adult health care environment:

Pediatric health care environment

Adult health care environment

Doctor discomfort

Too many doctors

Multiple locations

Poor care coordination

Other disadvantage(s)

Please briefly describe other disadvantages of the Pediatric health care environment:

Please briefly describe other disadvantages of the Adult health care environment:

Thank you very much for your participation in this important research!

We are also interested in collecting data regarding quality of life for children growing up with EA/TEF that will also be used to advance the science of medical and surgical care of patients with this condition.

If you would be interested in completing a separate Quality of Life survey in the future, please provide your email address.

You have selected an option that triggers this survey to end right now.

To save your responses and end the survey, click the 'End Survey' button below. If you have selected the wrong option by accident and/or wish to return to the survey, click the 'Return and Edit Response' button.