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

A tool created with support from a grant from the Cystic Fibrosis Foundation (DICKIN22Q0) Last updated: November 25, 2024

Growth Challenges are Common

Children with CF may have trouble gaining weight and sometimes this slows down their height gain as well. Children with CF need to consume more calories to help them grow optimally, sometimes nearly twice as many calories as other children. This is because kids with CF need 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.

If your child with CF is having a difficult time eating enough or the effort needed to help them grow is becoming very challenging for your family,  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 healthy way for your child to get the calories and nutrients they need to grow, but many families have questions and concerns about G-tubes and their impact 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 bring up a number of emotions. Many caregivers of children with CF 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.

Because it is a personalized decision, this decision aid was created for caregivers to learn about:

- G-tubes in CF care, including data from studies about people with CF
- Caregivers’ experiences with deciding about G-tube placement
- Caregivers’ experiences caring for a child with CF and a G-tube​


This tool is designed to help you be better prepared to talk about a G-tube with your CF care team and to make the best decision for your child and family.

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

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?
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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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How stressful are mealtimes at home?
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Under Construction

Children >11 years will be important decision-makers when considering a G-tube. Currently, this tool focuses on caregivers of young children with CF, but we know it will be important to have a section for teenagers to learn about G-tubes, to provide guidance on how to have discussions with teenagers about G-tubes, as well as information for teenagers about caring for their G-tube and concerns about body image.

Stay tuned for more information soon!

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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 to bring up in future conversations with your CF care team.

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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
  • Increased work for caregivers
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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
  • Increased work for caregivers
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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
  • Increased work for caregivers
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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
  • Increased work for caregivers
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Based on your answers...

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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 important in CF Care?

Checking your child’s weight and height at each appointment is important to monitor your child’s growth trajectory over time. Optimizing growth is essential for all children, but especially important for children with CF as improved growth is associated with improved pulmonary health, including lung function, and nutrition over their lifetime.

If you or your care team has concerns about how your child is growing or if their growth has slowed down, your CF team will partner with you to explore why and how it can be improved. 

Based on your child’s age range, these are strategies that should be thoroughly explored with your CF care team.

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-Optimizing enzyme dosing and administration 
-Suggestions for 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
-Regimen to manage constipation if present
-Consideration of a reflux medication
-Feeding behavior evaluation if concerns for sensory based feeding difficulties

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-Suggestions for 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
-Regimen to manage constipation if present
-Consideration of a reflux medication
-Feeding behavior evaluation if concerns for sensory based feeding difficulties

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-Suggestions for increasing the calories in each snack and meal, especially your child's favorite foods
-Suggestions for scheduling mealtimes and snacks
-Mealtime behavior management if cooperation is low and meals are always stressful
-Testing different oral supplements (high-calorie beverages, like smoothies and shakes) to find your child's favorite
-Regimen to manage constipation if present
-Consideration of a reflux medication
-Address symptoms of sinus disease
-Feeding behavior evaluation if concerns for sensory based feeding difficulties
-Testing for other conditions that may make it harder to gain or maintain weight, including bacterial overgrowth
-Trial a medication to help improve your child’s appetite

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-Optimizing enzyme dosing and administration 
-Suggestions for increasing the calories in each snack and meal, especially your child's favorite foods
-Suggestions for scheduling mealtimes and snacks
-Mealtime behavior management if cooperation is low and meals are always stressful
-Testing different oral supplements (high-calorie beverages, like smoothies and shakes) to find your child's favorite
-Regimen to manage constipation if present
-Consideration of a reflux medication
-Address symptoms of sinus disease
-Feeding behavior evaluation if concerns for sensory based feeding difficulties
-Testing for other conditions that may make it harder to gain or maintain weight, including bacterial overgrowth
-Trial a medication to help improve your child’s appetite

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-Optimizing enzyme dosing and administration 
-Suggestions for increasing the calories in each snack and meal, especially your child's favorite foods
-Suggestions for scheduling mealtimes and snacks
Mealtime behavior management if cooperation is low and meals are always stressful
-Testing different oral supplements (high-calorie beverages, like smoothies and shakes) to find your child's favorite
-Regimen to manage constipation if present
-Consideration of a reflux medication
-Address symptoms of sinus disease
-Feeding behavior evaluation if concerns for sensory based feeding difficulties
-Testing for other conditions that may make it harder to gain or maintain weight, including bacterial overgrowth
-Trial a medication to help improve your child’s appetite
-Consider testing for CF-related diabetes

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-Suggestions for increasing the calories in each snack and meal, especially your child's favorite foods
-Suggestions for scheduling mealtimes and snacks
Mealtime behavior management if cooperation is low and meals are always stressful
-Testing different oral supplements (high-calorie beverages, like smoothies and shakes) to find your child's favorite
-Regimen to manage constipation if present
-Consideration of a reflux medication
-Address symptoms of sinus disease
-Feeding behavior evaluation if concerns for sensory based feeding difficulties
-Testing for other conditions that may make it harder to gain or maintain weight, including bacterial overgrowth
-Trial a medication to help improve your child’s appetite
-Consider testing for CF-related diabetes

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If you, your CF dietitian, and CF team have tried everything but growth is still a concern, a G-tube may be a healthy choice for your child.

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YIf you, your CF dietitian, and CF team have tried everything but growth is still a concern, a G-tube may be a healthy choice for your child.

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What is tube feeding?​

Tube feeding is when a soft tube is used to provide nutrition directly into the stomach.  Typically the same supplements/formulas that your care team has prescribed for your child to drink can go through the tube. Families can also give certain blended foods, fluids, and some medications.​ 
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, can be temporary. G-tubes may be used for months to years and can be easily removed when weight challenges resolve.

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Why are G-tubes used in CF​?

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. 

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

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. ​

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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. It will leave a scar when it is removed.

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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 might be used for a short period of time to ensure tube feeding leads to weight gain before getting a G-tube. ​

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



There are two methods of G-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.

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.

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.

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Do you have any questions about G-tubes or this decision aid?
If you are on the steering committee, please input your feedback here.
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References

CFF Resources:

Nutritional Basics for CF (7 minute read)

https://www.cff.org/managing-cf/nutritional-basics

Enteral Tube Feeding Guidelines (10 minute read)

https://www.cff.org/medical-professionals/enteral-tube-feeding-clinical-care-guidelines



Medical Articles:

Impact of Improved nutritional status on health outcomes in CF

https://www.cysticfibrosisjournal.com/article/S1569-1993(23)00060-7/abstract

Factors influencing G-tube decision-making among caregivers of children with CF

https://www.cysticfibrosisjournal.com/article/S1569-1993(24)00006-7/

Attitudes toward G-tubes among caregivers and children with CF

https://onlinelibrary.wiley.com/doi/10.1097/01.mpg.0000154656.64073.e1

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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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Review your answers