A Decision Aid to Help Families Considering G-tube Placement for their Child with Cystic Fibrosis

Weight Challenges Are Common Among Children With Cystic Fibrosis

Weight challenges, or trouble gaining weight, are common in cystic fibrosis (CF), including in young children. Children with CF need to consume more calories to help them feel their best. Click here to understand why.

When weight challenges develop, your care team may bring up the option of tube feeding, including a gastrostomy tube, or G-tube for short.

A G-tube can be a great way to get the calories and nutrients that you or your child with cystic fibrosis need to gain and maintain a healthy weight.
Considering a G-tube is a big and often difficult decision that impacts both the child with CF and their caregivers​.

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How to Use This Decision Aid

Thinking about a G-tube for your child with CF can feel overwhelming, scary, and bring up a lot of emotions for caregivers. ​Click here to learn more.

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 for caregivers of children with CF to:
- Get the facts about G-tubes, including data from studies about people with CF
- Learn about other people’s experiences with deciding about G-tube placement
- Learn about other people’s experiences caring for a child with CF and a G-tube​

* This tool is designed to help caregivers feel informed about G-tubes and better prepared to make the best decision for their child and family.

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

Which of these statements best describes you?
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How old is your child?
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Do you know your child's weight percentile i.e. weight-for-length (WFL) or body mass index (BMI)?
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Does your child currently have now or in the past any of the below conditions?
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Is your child eligible for highly effective modulator therapies?
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How much do you know about the benefits of G-tube feeding?
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How much do you know about the risks/complications of G-tube feeding?
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If your team has recommended a G-tube for your child

Where are you in the decision-making process?
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This decision is hard for me to make.
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I feel pressure to make a specific choice.
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I’m certain about the best choice for my child and family.
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We know families have different reasons to consider a G-tube. Choose the reasons guiding your decision-making.

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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?
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
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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
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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
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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
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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?
Rank: 1
  • - select a option -
  • Surgery
  • Anesthesia
  • How it would affect my child's life (school, sports)
  • How it would affect my child's ability to eat
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Rank: 2
  • - select a option -
  • Surgery
  • Anesthesia
  • How it would affect my child's life (school, sports)
  • How it would affect my child's ability to eat
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Rank: 3
  • - select a option -
  • Surgery
  • Anesthesia
  • How it would affect my child's life (school, sports)
  • How it would affect my child's ability to eat
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Rank: 4
  • - select a option -
  • Surgery
  • Anesthesia
  • How it would affect my child's life (school, sports)
  • How it would affect my child's ability to eat
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Additionally, your child is not currently eligible for highly effective modulator therapies.

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This tool will help you learn about the role of G-tubes in CF care and when a child with CF might be recommended to consider G-tube placement so that you will feel more prepared and knowledgeable if you and your family consider this decision in the future.

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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. Information that may be more relevant to your decision-making will be highlighted throughout the tool.

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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 of 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.

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Why is growth so important in CF Care?

Optimizing growth is essential for all children, but especially important for children with CF as improved nutritional status is associated with improved long-term health. Checking your child’s weight at each appointment is important to make sure your child’s growth trajectory over time is closer to the 50th percentile, which traditionally has been associated with improved outcomes for people with CF. Click here to learn more.

If your child struggles to gain or maintain weight over time, your care team will guide you through options to optimize your child’s growth. Based on your child’s age range these options can include things like:

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Optimizing growth is essential for all children, but especially important for children with CF as improved nutritional status is associated with improved long-term health. Checking your child’s weight at each appointment is important to make sure your child’s growth trajectory over time is closer to the 50th percentile, which traditionally has been associated with improved outcomes for people with CF. Click here to learn more.

If your child’s weight has consistently been below the 50th percentile goal, your care team has probably discussed options to optimize your child’s growth. Based on your child’s age range these options can include things like:

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-Optimizing enzyme dosing and administration (only included if pancreatic insufficient for all ages)
-Suggestions for increasing the caloric density of 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

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-Suggestions for increasing the caloric density of 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

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-Suggestions for increasing the caloric density of each snack and meal and adding supplements
-Testing for other conditions that may make it harder to gain or maintain weight
-Suggestions for scheduling mealtimes and snacks
-Consideration of a reflux medication to help with fat absorption
-Trial a medication to help improve your child’s appetite
-Address symptoms of sinus disease
-Regimen to manage constipation
-Assess for bacterial overgrowth
-Feeding behavior evaluation if concerns for sensory feeding disorder
-Trial a medication to help improve your child’s appetite

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-Optimizing enzyme dosing and administration
-Suggestions for increasing the caloric density of each snack and meal, especially their favorite foods
-Suggestions for scheduling mealtimes and snacks
-Testing different oral supplements (high calorie beverages) to find your child's favorite
-Testing for other conditions that may make it harder to gain or maintain weight
-Consideration of a reflux medication to help with fat absorption
-Address symptoms of sinus disease
-Regimen to manage constipation
-Assess for bacterial overgrowth
-Feeding behavior evaluation if concerns for sensory feeding disorder
-Trial a medication to help improve your child’s appetite

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-Optimizing enzyme dosing and administration
-Suggestions for increasing the caloric density of each snack and meal, especially their favorite foods
-Suggestions for scheduling mealtimes and snacks
-Testing different oral supplements (high calorie beverages) to find your child's favorite
-Testing for other conditions that may make it harder to gain or maintain weight
-Consideration of a reflux medication to help with fat absorption
-Address symptoms of sinus disease
-Regimen to manage constipation
-Assess for bacterial overgrowth
-Feeding behavior evaluation if concerns for sensory feeding disorder
-Trial a medication to help improve your child’s appetite

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-Suggestions for increasing the caloric density of each snack and meal, especially their favorite foods
-Suggestions for scheduling mealtimes and snacks
-Testing different oral supplements (high calorie beverages) to find your child's favorite
-Testing for other conditions that may make it harder to gain or maintain weight
-Consideration of a reflux medication to help with fat absorption
-Address symptoms of sinus disease
-Regimen to manage constipation
-Assess for bacterial overgrowth
-Feeding behavior evaluation if concerns for sensory feeding disorder
-Trial a medication to help improve your child’s appetite

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You should always discuss the different options that are available for your specific child. If all these options are not successful in helping improve your child’s weight challenges, your team may discuss the option of tube feeding, or a G-tube.

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You should always discuss the different options that are available for your specific child. If all these options have been tried and your child continues to have nutritional challenges, a G-tube may be good option for your child and family.

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What is tube feeding?​

Tube feeding is when a soft tube is used to provide nutrition (typically formula), fluids, or medications from outside the stomach directly into the stomach.​ Usually the same supplements/formulas that your care team has prescribed for you to drink can go through the tube.

Tube feeding 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, may be used for months to years, and can be removed when weight challenges resolve.

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Why are G-tubes used in CF​?

Despite caregivers' best efforts and trying every option to improve weight gain, nearly 1/5 children with CF will use a form of tube feeding by age 10​.

Children with CF have calorie needs that are 1 ½ to 2 times higher than those of people without CF, and it can be hard to eat that amount of food in one day. G-tubes make it easier to take in more calories to gain and maintain a healthy weight, which can help people with CF to live longer and healthier lives.

The Cystic Fibrosis Foundation has created guidelines related to the use of G-tubes in people with CF. Click here to learn more about the guidelines. ​

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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 longer term option but can easily be removed when no longer needed

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NASOGASTRIC TUBE (NG)
- A thin, flexible tube that goes in the nose, down your throat and into the stomach
- Less invasive because inserting it does not require a surgical incision
- Visible on the face
- Proper placement can be taught and done at home by caregivers, but may be challenging with younger children
- Can be placed at night and removed during the day for school
- Typically a short-term option​

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



Continuous feeding: These feeds are typically given overnight via a feeding pump, while your child is asleep. This option is most common for children with CF, especially for children in school. These feeds may impact appetite for breakfast.

Bolus feeding: A feeding given over 5-40 minutes, by gravity or on a feeding pump, 3-5 times per day, depending on how much the child eats or drinks by mouth at mealtimes or feedings.

Your CF dietician will work with you to find a routine that meets your needs and schedule as well as what works best for your child. This will include picking the right nutrition option for your child, including choosing between commercial formulas or blenderized diets.

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What else would you like to know about G-tubes?
If you are on the steering committee, please input suggestions here.
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This is the end of Module 1, which covered the basics about G-tubes.

The next modules will walk you through some of the common benefits as well as common concerns about G-tube feeding for children with CF as well as caregivers experiences caring for a child with CF and a G-tube.

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Next Module