Growth Challenges are Common for People with Cystic Fibrosis

Cystic fibrosis (CF) affects many parts of the body. As part of their disease, children with CF commonly have trouble gaining weight. Trouble gaining weight can also slow down their height gain, which may prevent them from meeting their height potential and affect their lung development.

Children with CF need to consume more calories than children without CF. This is because they require increased energy to fight lung infections, to compensate for their difficulties absorbing nutrients, and to keep their lungs and body strong to feel their best.

Checking your child’s growth at each appointment is important to make sure their trajectory over time is closer to the 50th percentile. Traditionally, being close to or above the 50th percentile has been shown to support long-term health and be associated with improved outcomes for people with CF.

If your child with CF is having a difficult time eating enough to help them grow or the effort needed to help them grow is becoming very challenging for your family,  your CF care team may bring up the option of tube feeding, including a gastrostomy tube, or G-tube for short.

Cystic fibrosis (CF) affects many parts of the body. As part of their disease, children with CF commonly have trouble gaining weight. Trouble gaining weight can also slow down their height gain, which may prevent them from meeting their height potential and affect their lung development. 
 
Children with CF need to consume more calories than children without CF. This is because they require increased energy to fight lung infections, to compensate for their difficulties absorbing nutrients, and to keep their lungs and body strong to feel their best. 
 
Checking your child’s growth at each appointment is important to make sure their trajectory over time is closer to the 50th percentile. Traditionally, being close to or above the 50th percentile has been shown to support long-term health and be associated with improved outcomes for people with CF. 
 
If your child with CF is having a difficult time eating enough to help them grow or the effort needed to help them grow is becoming very challenging for your family,  your CF care team may bring up the option of tube feeding, including a gastrostomy tube, or G-tube for short.

<p><span style="font-family: 'Avenir', sans-serif;"><br />
<br />
Cystic fibrosis (CF) affects many parts of the body. As part of their disease, children with CF commonly have trouble gaining weight. Trouble gaining weight can also slow down their height gain, which may prevent them from meeting their height potential and affect their lung development.<br />
<br />
Children with CF need to consume more calories than children without CF. This is because they require increased energy to fight lung infections, to compensate for their difficulties absorbing nutrients, and to keep their lungs and body strong to feel their best.<br />
<br />
Checking your child’s growth at each appointment is important to make sure their trajectory over time is closer to the 50th percentile. Traditionally, being close to or above the 50th percentile has been shown to support long-term health and be associated with improved outcomes for people with CF. <br />
<br />
If your child with CF is having a difficult time eating enough to help them grow or the effort needed to help them grow is becoming very challenging for your family,  your CF care team may bring up the option of tube feeding, including a <b>gastrostomy tube</b>, or <b>G-tube</b> for short.</p></span>

Field is required!

How to Use This Decision Aid

Having a G-tube can be a healthy way for your child with CF to get the calories and nutrients they need to grow.

Families typically have many questions and concerns about G-tubes and the potential impact of a G-tube on their child as well as their family. Caregivers often report it is a difficult decision with many pros and cons to consider.

Decision aids are tools to help people who are considering a potential health decision that has benefits as well as risks and complications, such as a G-tube.

This decision aid was created with support from the Cystic Fibrosis Foundation and with help from caregivers of children with CF and CF specialists to to help you feel more informed about G-tubes and help you make the best decision for your child’s health and your family.

This decision aid will have 3 modules. At the end of each module, you will be able to download your responses and questions to help guide conversations with your care team about the best decision for your child and family.

Having a G-tube can be a healthy way for your child with CF to get the calories and nutrients they need to grow. 
 
Families typically have many questions and concerns about G-tubes and the potential impact of a G-tube on their child as well as their family. Caregivers often report it is a difficult decision with many pros and cons to consider. 
 
Decision aids are tools to help people who are considering a potential health decision that has benefits as well as risks and complications, such as a G-tube. 
 
This decision aid was created with support from the Cystic Fibrosis Foundation and with help from caregivers of children with CF and CF specialists to to help you feel more informed about G-tubes and help you make the best decision for your child’s health and your family. 
 
This decision aid will have 3 modules. At the end of each module, you will be able to download your responses and questions to help guide conversations with your care team about the best decision for your child and family.

<p><span style="font-family: 'Avenir', sans-serif;">Having a G-tube can be a healthy way for your child with CF to get the calories and nutrients they need to grow.<br />
<br />
Families typically have many questions and concerns about G-tubes and the potential impact of a G-tube on their child as well as their family. Caregivers often report it is a difficult decision with many pros and cons to consider.<br />
<br />
Decision aids are tools to help people who are considering a potential health decision that has benefits as well as risks and complications, such as a G-tube.<br />
 <br />
This decision aid was created with support from the Cystic Fibrosis Foundation and with help from caregivers of children with CF and CF specialists to to help you feel more informed about G-tubes and help you make the best decision for your child’s health and your family.<br />
<br />
This decision aid will have 3 modules. At the end of each module, you will be able to download your responses and questions to help guide conversations with your care team about the best decision for your child and family.</p></span>

Field is required!

Let’s start with a few quick questions to help tailor the information in this decision aid to make it useful for you.

How old is your child?

<1 year old

1-4 year(s) old

5-10 years old

>11 years old

Field is required!

Do you know your child's weight percentile i.e. weight-for-length (WFL) or body mass index (BMI)?

Yes

Field is required!

<10th percentile weight-for-length (WFL)

10-25th percentile WFL

26-50th percentile WFL

>51st percentile WFL

Field is required!

<10th percentile weight-for-length (WFL) or body mass index (BMI)

10-25th percentile WFL or BMI

26-50th percentile WFL or BMI

>51st percentile WFL or BMI

Field is required!

<10th percentile body mass index (BMI)

10-25th percentile BMI

26-50th percentile BMI

>51st percentile BMI

Field is required!

Does your child currently have now or in the past any of the below conditions?

History of meconium ileus or intestinal surgery

Pancreatic insufficiency

Frequent respiratory infections (with or without hospitalization)

Difficulty gaining height

Poor appetite

Picky eating

Sensory-based feeding difficulties

Constipation or Distal Intestinal Obstruction Syndrome (DIOS)

CF-related diabetes (CFRD)

None of these

Field is required!

How stressful is feeding your child or mealtimes at home?

Not at all

Somewhat

Very

Field is required!

Has your CF team recommended a G-tube?

Yes

Field is required!

Under Construction

Children >11 years will be important decision-makers when considering a G-tube. Currently, this tool only focuses on caregivers of young children with CF.

We know it will be important to have a section for older kids and teenagers to learn about G-tubes, to provide guidance on how to have discussions about G-tubes with older kids, as well as information for older kids and teenagers about caring for their G-tube and concerns about body image.

Stay tuned for more age-appropriate information about G-tube decision-making soon!

If you are interested in learning more generally about G-tubes in CF care, this tool will still have useful information to consider and discuss with your care team.

<p><span style="font-family: \'Avenir\', sans-serif;">Children >11 years will be important decision-makers when considering a G-tube. Currently, this tool only focuses on caregivers of <b><em>young children</b></em> with CF. <br />
<br />
We know it will be important to have a section for older kids and teenagers to learn about G-tubes, to provide guidance on how to have discussions about G-tubes with older kids, as well as information for older kids and teenagers about caring for their G-tube and concerns about body image. <br><br />
Stay tuned for more age-appropriate information about G-tube decision-making soon! <br> <br />
If you are interested in learning more generally about G-tubes in CF care, this tool will still have useful information to consider and discuss with your care team.<br />
</p></span>

Field is required!

Ways to Support Growth in CF Care

Checking your child’s growth at each appointment is important to make sure their trajectory over time is closer to the 50th percentile. Traditionally, being close to or above the 50th percentile has been shown to support long-term health and be associated with improved outcomes for people with CF.

<p><span style="font-family: 'Avenir', sans-serif;">Checking your child’s growth at each appointment is important to make sure their trajectory over time is closer to the 50th percentile. Traditionally, being close to or above the 50th percentile has been shown to support long-term health and be associated with improved outcomes for people with CF.</p></span>

Field is required!

If your child with CF has had growth challenges, what options have you tried to improve their growth? (select all)

<p><span style="font-family: 'Avenir', sans-serif;">If your child with CF has had growth challenges, what options have you tried to improve their growth? (select all)</p></span>

Field is required!

Optimizing enzyme dosing and administration

Increasing the calories in each bottle or feeding, such as adding extra formula to breastmilk or formula bottles

Testing for other conditions that may make it harder to gain or maintain weight

Managing constipation if present

Consideration of a reflux medication

Feeding behavior evaluation if concerns for sensory based feeding difficulties

Field is required!

Increasing the calories in each bottle or feeding, such as adding extra formula to breastmilk or formula bottles

Testing for other conditions that may make it harder to gain or maintain weight

Managing constipation if present

Consideration of a reflux medication

Feeding behavior evaluation if concerns for sensory based feeding difficulties

Field is required!

Increasing the calories in each snack and meal, especially your child's favorite foods

Testing different oral supplements (high-calorie beverages, like smoothies and shakes) to find your child's favorite

Scheduling mealtimes and snacks

Suggestions for mealtime behavior management if meals are always stressful

Managing constipation if present

Consideration of a reflux medication

Address symptoms of sinus disease

Testing for other conditions that may make it harder to gain or maintain weight, including bacterial overgrowth or growth hormone deficiency

Feeding behavior evaluation if concerns for sensory based feeding difficulties

Trial a medication to help improve your child’s appetite

Field is required!

Increasing the calories in each snack and meal, especially your child's favorite foods

Testing different oral supplements (high-calorie beverages, like smoothies and shakes) to find your child's favorite

Scheduling mealtimes and snacks

Suggestions for mealtime behavior management if meals are always stressful

Managing constipation if present

Consideration of a reflux medication

Address symptoms of sinus disease

Testing for other conditions that may make it harder to gain or maintain weight, including bacterial overgrowth or growth hormone deficiency

Feeding behavior evaluation if concerns for sensory based feeding difficulties

Trial a medication to help improve your child’s appetite

Field is required!

Increasing the calories in each snack and meal, especially your child's favorite foods

Testing different oral supplements (high-calorie beverages, like smoothies and shakes) to find your child's favorite

Scheduling mealtimes and snacks

Suggestions for mealtime behavior management if meals are always stressful

Managing constipation if present

Consideration of a reflux medication

Address symptoms of sinus disease

Testing for other conditions that may make it harder to gain or maintain weight, including bacterial overgrowth or growth hormone deficiency

Feeding behavior evaluation if concerns for sensory based feeding difficulties

Trial a medication to help improve your child’s appetite

Field is required!

Increasing the calories in each snack and meal, especially your child's favorite foods

Testing different oral supplements (high-calorie beverages, like smoothies and shakes) to find your child's favorite

Scheduling mealtimes and snacks

Suggestions for mealtime behavior management if meals are always stressful

Managing constipation if present

Consideration of a reflux medication

Address symptoms of sinus disease

Testing for other conditions that may make it harder to gain or maintain weight, including bacterial overgrowth or growth hormone deficiency

Feeding behavior evaluation if concerns for sensory based feeding difficulties

Trial a medication to help improve your child’s appetite

Field is required!

Select options you would be interested in trying or discussing further with your care team.

<p><span style="font-family: 'Avenir', sans-serif;">Select options you would be interested in trying or discussing further with your care team.  </p></span>

Field is required!

Optimizing enzyme dosing and administration

Increasing the calories in each bottle or feeding, such as adding extra formula to breastmilk or formula bottles

Testing for other conditions that may make it harder to gain or maintain weight

Managing constipation if present

Consideration of a reflux medication

Feeding behavior evaluation if concerns for sensory based feeding difficulties

Field is required!

Increasing the calories in each bottle or feeding, such as adding extra formula to breastmilk or formula bottles

Testing for other conditions that may make it harder to gain or maintain weight

Managing constipation if present

Consideration of a reflux medication

Feeding behavior evaluation if concerns for sensory based feeding difficulties

Field is required!

Increasing the calories in each snack and meal, especially your child's favorite foods

Testing different oral supplements (high-calorie beverages, like smoothies and shakes) to find your child's favorite

Scheduling mealtimes and snacks

Suggestions for mealtime behavior management if meals are always stressful

Managing constipation if present

Consideration of a reflux medication

Address symptoms of sinus disease

Testing for other conditions that may make it harder to gain or maintain weight, including bacterial overgrowth or growth hormone deficiency

Feeding behavior evaluation if concerns for sensory based feeding difficulties

Trial a medication to help improve your child’s appetite

Field is required!

Increasing the calories in each snack and meal, especially your child's favorite foods

Testing different oral supplements (high-calorie beverages, like smoothies and shakes) to find your child's favorite

Scheduling mealtimes and snacks

Suggestions for mealtime behavior management if meals are always stressful

Managing constipation if present

Consideration of a reflux medication

Address symptoms of sinus disease

Testing for other conditions that may make it harder to gain or maintain weight, including bacterial overgrowth or growth hormone deficiency

Feeding behavior evaluation if concerns for sensory based feeding difficulties

Trial a medication to help improve your child’s appetite

Field is required!

Increasing the calories in each snack and meal, especially your child's favorite foods

Testing different oral supplements (high-calorie beverages, like smoothies and shakes) to find your child's favorite

Scheduling mealtimes and snacks

Suggestions for mealtime behavior management if meals are always stressful

Managing constipation if present

Consideration of a reflux medication

Address symptoms of sinus disease

Testing for other conditions that may make it harder to gain or maintain weight, including bacterial overgrowth or growth hormone deficiency

Feeding behavior evaluation if concerns for sensory based feeding difficulties

Trial a medication to help improve your child’s appetite

Field is required!

Increasing the calories in each snack and meal, especially your child's favorite foods

Testing different oral supplements (high-calorie beverages, like smoothies and shakes) to find your child's favorite

Scheduling mealtimes and snacks

Suggestions for mealtime behavior management if meals are always stressful

Managing constipation if present

Consideration of a reflux medication

Address symptoms of sinus disease

Testing for other conditions that may make it harder to gain or maintain weight, including bacterial overgrowth or growth hormone deficiency

Feeding behavior evaluation if concerns for sensory based feeding difficulties

Trial a medication to help improve your child’s appetite

Field is required!

Prior Knowledge about G-tubes

How much do you know about the benefits of G-tube feeding?

1: A little

2: Some

3: A lot

Field is required!

How much do you know about the risks/complications of G-tube feeding?

1: A little

2: Some

3: A lot

Field is required!

If your team has recommended a G-tube for your child

Where are you in the decision-making process?

Thinking about it

Made a choice

Field is required!

If your team has recommended a G-tube for your child

This decision was hard for me to make.

1: Strongly agree

2: Agree

3: Neither agree or disagree

4: Disagree

5: Strongly disagree

Field is required!

This decision is hard for me to make.

1: Strongly agree

2: Agree

3: Neither agree or disagree

4: Disagree

5: Strongly disagree

Field is required!

I feel pressure to make a specific choice.

1: Strongly agree

2: Agree

3: Neither agree or disagree

4: Disagree

5: Strongly disagree

Field is required!

I’m certain about the best choice for my child and family.

1: Strongly agree

2: Agree

3: Neither agree or disagree

4: Disagree

5: Strongly disagree

Field is required!

Thinking about your last visit with your care team,

How much did you and your CF team talk about the reasons you should consider a G-tube for your child?

Not at all

A little

Some

A lot

Field is required!

How much did you and your CF team talk about the reasons you might not consider a G-tube for your child?

Not at all

A little

Some

A lot

Field is required!

Your care team asked how you wanted to be involved in making the decision?

Not at all

A little

Some

A lot

Field is required!

Your care team made an effort to listen to the things that matter most to you when considering a G-tube for your child with CF?

Not at all

A little

Some

A lot

Field is required!

We know families have different reasons to consider a G-tube. Choose the reasons guiding your decision-making to bring up in future conversations with your CF care team.

<p><span style="font-family: \'Avenir\', sans-serif;">We know families have different reasons to consider a G-tube. Choose the reasons guiding your decision-making to bring up in future conversations with your CF care team. </p></span>

Field is required!

We know families have different reasons for choosing to pursue a G-tube. Select which reasons were most important in guiding your decision-making for your child with CF.

<p><span style="font-family: \'Avenir\', sans-serif;">We know families have different reasons for choosing to pursue a G-tube.  Select which reasons were most important in guiding your decision-making for your child with CF. </p></span>

Field is required!

Reasons I Am Considering This Option

Consider the benefits, advantages, or pros. How would you rank them according to how much they matter to you?

Reasons I Am Choosing a G-tube

Rank: 1

- select a option -
Help child gain weight
Help child fight infections better
Help child feel or look healthier
Help child have better quality of life
Help my child have more energy
Reduce the worry about eating enough

Field is required!

Rank: 2

- select a option -
Help child gain weight
Help child fight infections better
Help child feel or look healthier
Help child have better quality of life
Help my child have more energy
Reduce the worry about eating enough

Field is required!

Rank: 3

- select a option -
Help child gain weight
Help child fight infections better
Help child feel or look healthier
Help child have better quality of life
Help my child have more energy
Reduce the worry about eating enough

Field is required!

Rank: 4

- select a option -
Help child gain weight
Help child fight infections better
Help child feel or look healthier
Help child have better quality of life
Help my child have more energy
Reduce the worry about eating enough

Field is required!

Reasons I Am Concerned About This Option

Consider the risks, disadvantages, or cons. How would you rank them according to how much they matter to you?

Concerns I still have about G-tubes

Rank: 1

- select a option -
Surgery & Anesthesia
How much pain/discomfort it will cause my child
How it would affect my child\'s life (school, sports)
How it would affect my child\'s ability to eat
How much added work it will be for caregivers

Field is required!

Rank: 2

- select a option -
Surgery & Anesthesia
How much pain/discomfort it will cause my child
How it would affect my child\'s life (school, sports)
How it would affect my child\'s ability to eat
How much added work it will be for caregivers

Field is required!

Rank: 3

- select a option -
Surgery & Anesthesia
How much pain/discomfort it will cause my child
How it would affect my child\'s life (school, sports)
How it would affect my child\'s ability to eat
How much added work it will be for caregivers

Field is required!

Rank: 4

- select a option -
Surgery & Anesthesia
How much pain/discomfort it will cause my child
How it would affect my child\'s life (school, sports)
How it would affect my child\'s ability to eat
How much added work it will be for caregivers

Field is required!

Based on your answers...

<p><span style="font-family: 'Avenir', sans-serif;"><strong>You have...</strong><br> {child_age}{wfl}{bmi}{wflorbmi} and feeding your child and mealtimes are currently {mealtimes} stressful. <br></p></span>

Field is required!

<p><span style="font-family: 'Avenir', sans-serif;"><strong>The following conditions may impact your child’s nutritional status and potential need for a G-tube:</strong><br> <br> {conditions}<br />
</p></span>

Field is required!

How this tool can be helpful to you:
As a caregiver considering a G-tube, this tool will cover both the benefits and risks/complications of G-tubes as well as allow you to explore the experiences of other caregivers who navigated this decision.

<p><span style="font-family: 'Avenir', sans-serif;"><strong>How this tool can be helpful to you:</strong><br>As a caregiver considering a G-tube, this tool will cover both the benefits  and risks/complications of G-tubes as well as allow you to explore the experiences of other caregivers who navigated this decision.<br />
</p></span>

Field is required!

<p><span style="font-family: 'Avenir', sans-serif;"><strong>What information in this tool may be especially helpful in your decision-making:</strong><br>Information that may be more relevant to caring for a child with CF and a G-tube will be highlighted throughout the tool, especially your main concerns of :<br><br>- {concern1} <br>-  {concern2}<br />
</p></span>

Field is required!

How this tool can be helpful to you:
As a caregiver who has decided a G-tube is the best choice for your child and family, this tool will cover both the benefits and risks complications of G-tubes as well as allow you to explore the experiences of parenting a child with CF and a G-tube.

Information that may be more relevant to caring for a child with CF and a G-tube will be highlighted throughout the tool.

<p><span style="font-family: 'Avenir', sans-serif;"><strong>How this tool can be helpful to you:</strong><br>As a caregiver who has decided a G-tube is the best choice for your child and family, this tool will cover both the benefits and risks complications of G-tubes as well as allow you to explore the experiences of parenting a child with CF and a G-tube. <br><br>Information that may be more relevant to caring for a child with CF and a G-tube will be highlighted throughout the tool. </p></span>

Field is required!

How this tool can be helpful to you:

Your CF team has not recommended a G-tube, but this tool can help you learn about the role of G-tubes in CF care. It will also explore reasons why your CF team might recommend a G-tube so that you will feel more prepared and knowledgeable if you and your family consider this decision in the future.

<p><span style="font-family: 'Avenir', sans-serif;"><strong>How this tool can be helpful to you:</strong><br />
<br>Your CF team has not recommended a G-tube, but this tool can help you learn about the role of G-tubes in CF care.  It will also explore reasons why your CF team might recommend a G-tube so that you will feel more prepared and knowledgeable if you and your family consider this decision in the future.</p></span>

Field is required!

Tube Feeding Basics

Tube feeding is when a soft tube is used to provide nutrition directly into the stomach. 

Typically, the same supplements/formulas that your CF care team has recommended your child drink to increase their caloric intake can go through the tube. Families can also give certain blended foods, fluids, and most medications through the tube. 

Tube feeding typically does not replace eating by mouth. Children can eat as much as they want and also receive extra nutrition to help them grow, develop, and thrive.

Tube feeding, such as a G-tube, can be temporary. G-tubes may be used for months to years and can be easily removed when weight challenges resolve.

<p><span style="font-family: 'Avenir', sans-serif;">Tube feeding is when a soft tube is used to provide nutrition directly into the stomach. <br />
<br />
Typically, the same supplements/formulas that your CF care team has recommended your child drink to increase their caloric intake can go through the tube. Families can also give certain blended foods, fluids, and most medications through the tube. <br><br><u><b>Tube feeding typically does not replace eating by mouth.</b></u> Children can eat as much as they want <em>and</em> also receive extra nutrition to help them grow, develop, and thrive. <br><br />
<u><b>Tube feeding, such as a G-tube, can be temporary. </u></b>G-tubes may be used for months to years and can be easily removed when weight challenges resolve. </p></span>

Field is required!

Why are tube feedings used in CF care?

Children with CF have calorie needs that are 1.5 to 2 times higher than those of people without CF. It can be hard for a child to eat that amount of food each day and can also be stressful for families.

Despite caregivers' best efforts and trying every option recommended by their CF care team, CF can make it hard for some children to grow. Tube feedings are recommended by the Cystic Fibrosis Foundation (CFF) because they are a tool that can help children grow and feel their best.

According to the CFF Patient Registry, nearly 1 in 5 children with CF will use a form of tube feeding by age 10. This means many families consider this decision for their child with CF.

<p><span style="font-family: 'Avenir', sans-serif;">Children with CF have calorie needs that are 1.5 to 2 times higher than those of people without CF. It can be hard for a child to eat that amount of food each day and can also be stressful for families.<br />
<br />
Despite caregivers' best efforts and trying every option recommended by their CF care team, CF can make it hard for some children to grow. Tube feedings are recommended by the Cystic Fibrosis Foundation (CFF) because they are a tool that can help children grow and feel their best.<br />
<br />
According to the CFF Patient Registry, nearly 1 in 5 children with CF will use a form of tube feeding by age 10. This means many families consider this decision for their child with CF.</p></span>

Field is required!

Cystic Fibrosis Foundation Patient Registry 2023 Annual Data Report

<center><p><span style="font-family: 'Avenir', sans-serif;">Cystic Fibrosis Foundation Patient Registry 2023 Annual Data Report</p></span></center>

Field is required!

What are the options for tube feeding in CF?

GASTROSTOMY TUBE (G-Tube)
- A soft flexible tube with a plastic button at the skin that enters the stomach from an incision in the abdomen
- Requires a procedure with anesthesia to place
- Less visible because usually hidden by shirt
- Typically a longer term option, but can easily be removed when no longer needed
- There will be a scar when it is removed

<p><span style="font-family: 'Avenir', sans-serif;"><strong><u>GASTROSTOMY TUBE (G-Tube) </u></strong><br />
- A soft flexible tube with a plastic button at the skin that enters the stomach from an incision in the abdomen<br />
- Requires a procedure with anesthesia to place<br />
- Less visible because usually hidden by shirt<br />
- Typically a longer term option, but can easily be removed when no longer needed<br />
- There will be a scar when it is removed </p></span>

Field is required!

NASOGASTRIC TUBE (NG)
- A long, thin, flexible tube that goes in the nose and down the throat so the tip is in the stomach.
- The end of the tube is taped to the cheek to hold it in place, though young children (toddler/preschoolers) can still pull the tube out (and commonly do).
- Less invasive because surgery is not required
- NG tube placement may be uncomfortable at first but gets easier with practice. Caregivers and older children/adults can be taught how to insert the NG tube at home themselves and to confirm proper placement
- It can be inserted at night and removed during the day for school. Visible on the face only while it is in place
- NG feeding can be trialed for a period of time a child gets a G-tube

<p><span style="font-family: 'Avenir', sans-serif;"><strong><u>NASOGASTRIC TUBE (NG)</u></strong> <br>- A long, thin, flexible tube that goes in the nose and down the throat so the tip is in the stomach.   <br />
- The end of the tube is taped to the cheek to hold it in place, though young children (toddler/preschoolers) can still pull the tube out (and commonly do).  <br />
- Less invasive because surgery is not required<br />
- NG tube placement may be uncomfortable at first but gets easier with practice. Caregivers and older children/adults can be taught how to insert the NG tube at home themselves and to confirm proper placement<br />
- It can be inserted at night and removed during the day for school. Visible on the face only while it is in place<br />
- NG feeding can be trialed for a period of time a child gets a G-tube </p></span>

Field is required!

How do tube feedings fit into your child's day?

There are two common methods of tube feeding – continuous infusion overnight and bolus feeds throughout the day. Talk with your CF dietitian to determine which schedule would work best for your family. This will include picking the right nutrition option for your child, including choosing between commercial formulas or blenderized diets.

<p><span style="font-family: 'Avenir', sans-serif;">There are two common methods of tube feeding – continuous infusion overnight  and bolus feeds throughout the day. Talk with your CF dietitian to determine which schedule would work best for your family. This will include picking the right nutrition option for your child, including choosing between commercial formulas or blenderized diets. </p></span>

Field is required!

Continuous feeding: These feedings are typically given over a longer period of time, such as overnight while your child is asleep. These feeds are given by a feeding pump. This option is most common for children and adults who eat well during the day. Getting extra calories during the night will likely delay your child’s appetite for breakfast by several hours.

<p><span style="font-family: 'Avenir', sans-serif;"><br />
<b><u>Continuous feeding:</b></u> These feedings are typically given over a longer period of time, such as overnight while your child is asleep. These feeds are given by a feeding pump. This option is most common for children and adults who eat well during the day. Getting extra calories during the night will likely delay your child’s appetite for breakfast by several hours.  </p></span>

Field is required!

<iframe src="https://www.youtube.com/embed/vKxK_wNHIsY?si=Y6q5xVJJdyCHUS0I" title="YouTube video player" frameborder="0" allow="accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share" referrerpolicy="strict-origin-when-cross-origin" allowfullscreen style="width: 300%;"></iframe>

Field is required!

<iframe src="https://www.youtube.com/embed/YaifZrphkSk?si=xizwmYPMf_4zTX3y" title="YouTube video player" frameborder="0" allow="accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share" referrerpolicy="strict-origin-when-cross-origin" allowfullscreen style="width: 300%;"></iframe><br />

Field is required!

Bolus feeding: These feedings are typically given over 5-40 minutes, by gravity or on a feeding pump, about 3 times per day, depending on how much your child eats or drinks at mealtimes. Bolus feeds can be given as part of a meal after your child eats what they want. Children who eat small amounts by mouth will benefit from getting a bolus feeding at mealtimes to provide good nutrition while they are awake.

<p><span style="font-family: 'Avenir', sans-serif;"><br />
<b><u>Bolus feeding:</b></u> These feedings are typically given over 5-40 minutes, by gravity or on a feeding pump, about 3 times per day, depending on how much your child eats or drinks at mealtimes.  Bolus feeds can be given as part of a meal after your child eats what they want. Children who eat small amounts by mouth will benefit from getting a bolus feeding at mealtimes to provide good nutrition while they are awake.  </p></span>

Field is required!

Choosing the best form of tube feeding for your child?

How interested are you in the following tube feeding options for your child?

<span style="font-family: \'Avenir\', sans-serif;"><h2>How interested are you in the following tube feeding options for your child? </h2></span>

Field is required!

Nasogastric (NG) tube

Not at all

Somewhat

Very

Field is required!

If you selected not at all, why?

Field is required!

Gastrostomy tube (G-tube)

Not at all

Somewhat

Very

Field is required!

If you selected not at all, why?

Field is required!

Continuous feeding

Not at all

Somewhat

Very

Field is required!

If you selected not at all, why?

Field is required!

Bolus feeding

Not at all

Somewhat

Very

Field is required!

If you selected not at all, why?

Field is required!

Questions

Do you have any questions, comments, or suggestions to improve this G-tube decision aid?

If you are on the steering committee, please input your feedback here.

Field is required!

A CF-specific resource to help you make the best decision for your family

This is the end of Module 1, which covered the basics about G-tubes and tube feedings.

<p><span style="font-family: \'Avenir\', sans-serif;">This is the end of Module 1, which covered the basics about G-tubes and tube feedings.</span></p>

Field is required!

<p><span style="font-family: \'Avenir\', sans-serif;">The next module will allow you to explore the many benefits of G-tube feeding. <br />
Because you are interested in <strong>{pros1} and {pros2},</strong> there will be information covering these topics that we encourage you to explore.<br />
</span></p>

Field is required!

<p><span style="font-family: \'Avenir\', sans-serif;">The final module will allow you explore the common concerns about G-tubes as well as potential complications. <br />
Because you are interested in <strong>{concern1} and {concern2}, </strong>there will be information covering these topics that we encourage you to explore.<br />
</span></p>

Field is required!

At the end of each module, you will have the ability to review your responses. Additionally, you will be able to download your responses and questions to help guide conversations with your care team about the best decision for your child and family.

To review and download your answers from module 1 click the button below.

<p><span style="font-family: \'Avenir\', sans-serif;">At the end of each module, you will have the ability to review your responses. Additionally, you will be able to download your responses and questions to help guide conversations with your care team about the best decision for your child and family.<br />
 <br />
To review and download your answers from module 1 click the button below.</span></p>

Field is required!

Module 1 References

Click here to learn more about one parent’s journey with considering a G-tube.

Next - Click to continue to summary

Growth Challenges are Common for People with Cystic Fibrosis

How to Use This Decision Aid

Let’s start with a few quick questions to help tailor the information in this decision aid to make it useful for you.

Under Construction

Ways to Support Growth in CF Care

Prior Knowledge about G-tubes

If your team has recommended a G-tube for your child

If your team has recommended a G-tube for your child

Thinking about your last visit with your care team,

Reasons I Am Considering This Option

Reasons I Am Choosing a G-tube

Reasons I Am Concerned About This Option

Concerns I still have about G-tubes

Based on your answers...

Tube Feeding Basics

Why are tube feedings used in CF​ care?

What are the options for tube feeding in CF?

How do tube feedings fit into your child's day?

Choosing the best form of tube feeding for your child?

How interested are you in the following tube feeding options for your child?

Questions

A CF-specific resource to help you make the best decision for your family

Growth Challenges are Common for People with Cystic Fibrosis

Why are tube feedings used in CF care?