Final Survey for The Paediatric Intensive Care (PICU) Nutrition Priority Setting Partnership (PSP) James Lind Alliance

Thank you for taking the time to complete this important survey that is trying to find better ways to feed children while they are in intensive care. To do this, the Paediatric Intensive Care (PICU) nutrition PSP are searching for the most important questions for research to answer.

You can see more about the project here PSP PICU Nutrition Webpage
　
What is this survey for?
Our first survey asked patients, carers and healthcare professionals to tell us what they thought were important questions about PICU nutrition. We have taken all your questions into account and checked the evidence in the published literature to see if questions had already been answered. The questions that have not been answered by research have been summarised and are listed in this new survey.　

We want to hear from you if you are (or used to be):
•A young person who was hospitalised on a PICU
•A parent or caregiver to a child who was hospitalised on a PICU
•A healthcare professional who takes care of children on a PICU

What are we asking you to do?

1. Please read the list of questions outlined below and tick the questions you think are important for researchers to answer based on your own experiences and opinions.

2. From that list you will then be required to select up to 10 questions that you feel would be in your top ten list.

How are the questions organised?
We have combined over 150 questions into 41 summary questions, grouped into 8 themes:

Group 1. Energy (calories) needs for children on breathing machines in PICU
Group 2. Children who require energy (calories) via a intravenous drip (parenteral nutrition) in PICU
Group 3. Measurements for children’s growth changes in PICU
Group 4. Health and the digestive system in PICU
Group 5. Feeding methods in PICU
Group 6. Extra vitamin supplementation in PICU
Group 7. After children are discharged from PICU
Group 8. Family involvement in PICU

Is it confidential?
This is an anonymous survey (i.e. no-one can tell who it is from) We will ask for a little information about you. This is so that we can understand who is completing the survey and whether we are hearing from a wide range of people.

Who to contact? If you would like to be to be kept informed about the progress of this Priority Setting Partnership please email: graeme.oconnor@nhs.net

We would like to thank you again for your time in completing this survey.

CLOSING DATE: Monday July 26st 2021

Question Title

* 1. It is important that we know a little about you, so that we can make sure different people from across the UK are giving us their views.

In relation to Paediatric Intensive Care, which of the following role best describes you?

Other (please specify)

Question Title

* 2. Please read the list of 41 questions below and tick the questions you think are important for researchers to answer based on your own experiences and opinions.

Each question has been assigned to group 1 to 8 and will appear randomly. In the next section, you'll have a chance to pick your Top 10.

Group 2. Children who require energy (calories) via intravenous drip (parenteral nutrition)
Are daily breaks in giving intravenous fat (lipid) necessary in children on intravenous nutrition with liver problems?

Group 6. Extra vitamin supplementation on PICU
Should extra vitamins be given to children on kidney dialysis to account for loses during continuous dialysis?

Group 7. Discharged from PICU
What is the impact of Post Intensive Care Syndrome on growth?

Group 1. Energy (calories) needs for children on PICU
Is there a need for a nutritional screening tool to identify risk of malnutrition in children who are on a breathing machine?.

Group 3. Growth changes on PICU
Can specific types of proteins (branch chain amino acids) reduce muscle loss in children who are on breathing machines for more than 7 days?

Group 1. Energy (calories) needs for children on PICU
How does cooling the body temperature during treatment of head injuries affect energy needs in children who are on a breathing machine?

Group 1. Energy (calories) needs for children on PICU
What are the energy (calorie) and protein needs for children who are on a specialised machine that adds oxygen to the blood (ECMO extracorporeal membrane oxygenation)?

Group 7. Discharged from PICU
Does a child's swallowing change as a result of having needed a breathing tube

Group 8. Family involvement on PICU
Can parental choices/ beliefs around nutrition be better understood by health professional and included in to the care of their child on breathing machines ?

Group 1. Energy (calories) needs for children on PICU
Do the energy (calorie) needs change for children who have been on a breathing machine for more than 5 days with no change in activity level?

Group 4. Health of the digestive system in children on PICU
Does giving probiotics in children on breathing machines reduce inflammation (cytokines)?

Group 8. Family involvement on PICU
What strategies should be in place on PICU to help with parental bonding with their baby when breast feeding is not possible?

Group 2. Children who require energy (calories) via intravenous drip (parenteral nutrition)
When should intravenous nutrition start in very underweight critically ill children who DO NOT have a working digestive system?

Group 6. Extra vitamin supplementation on PICU
Should thiamine (B Vitamin) be supplemented to help reduce infection (hyperlactatemia) in children on a breathing machine?

Group 1. Energy (calories) needs for children on PICU
Is there a need for a breast milk powder supplement specific for term infants who are fluid restricted on a breathing machine?

Group 4. Health of the digestive system in children on PICU
Is there a safe dose of probiotics (healthy bacteria) for children with low immune function (immunosuppression or immunocompromised) on breathing machines?

Group 5. Feeding methods on PICU
Can a low carbohydrate diet reduce illness related stress (inflammation) to infection (such as hyperlactatemia and hyperglycaemia) in children on breathing machines?

Group 7. Discharged from PICU
Should a special diet (high protein and vitamins) be encouraged for children who have been discharged home from intensive care?

Group 3. Growth changes on PICU
Is upper arm measurement (MUAC - mid upper arm circumference) a more reliable marker than weight measurements for nutritional status in children on breathing machines?

Group 6. Extra vitamin supplementation on PICU
How much vitamin D is needed to quickly restore low levels in children on breathing machines?

Group 7. Discharged from PICU
What are the long term feeding problems once a child is discharged home from intensive care in relation to Post Intensive Care Syndrome?

Group 1. Energy (calories) needs for children on PICU
What are the energy (calorie) and protein needs in children on breathing machines with liver problems?

Group 7. Discharged from PICU
Does a special diet (high protein) combined with early mobilisation (activity level) in children on breathing machines reduce muscle wasting?

Group 8. Family involvement on PICU
What are parents and professionals attitudes toward non- dairy protein formula as first line formula as part of wider efforts to tackle climate change and sustainability?

Group 2. Children who require energy (calories) via intravenous drip (parenteral nutrition)
Should nutrition be limited in the early phase of infection/ trauma to promote the body’s natural recovery?

Group 1. Energy (calories) needs for children on PICU
How useful is carbon dioxide production (respiratory quotient) in directing nutrition care in children on breathing machines?

Group 7. Discharged from PICU
Do children with obesity have more complications and worse long term outcomes following critical illness than healthy weight children?

Group 7. Discharged from PICU
Can non-nutritive feeding (use of dummies) reduce feeding aversion for infants on breathing machines

Group 1. Energy (calories) needs for children on PICU
How can energy (calorie) needs of babies on breathing machines be estimated?

Group 1. Energy (calories) needs for children on PICU
What are the energy (calorie) and protein need for children who are on a breathing machine and also need continuous kidney dialysis?

Group 5. Feeding methods on PICU
What is the definition of feed intolerance?

Group 5. Feeding methods on PICU
Is feeding in to the small bowel (post pyloric/ jejunal) better tolerated than feeding into stomach in children who are receiving non-invasive ventilation (such as Face mask - CPAP/ BiPAP)?

Group 1. Energy (calories) needs for children on PICU
How should energy (calorie) needs be calculated in children with obesity who are on a breathing machine?

Group 3. Growth changes on PICU
What is the physical and mental health impact on the child with weight loss on PICU?

Group 4. Health of the digestive system in children on PICU
Does giving probiotics (healthy bacteria) reduce the risk of hospital acquired infections in children on breathing machines?

Group 8. Family involvement on PICU
To what extent is parents/ carers nutrition compromised whilst their child is on PICU?

Group 3. Growth changes on PICU
What is the mental health impact on the care giver and family seeing significant weight loss of their child/ patient?

Group 6. Extra vitamin supplementation on PICU
Should vitamin D be supplemented in all children on breathing machines to help with lung function?

Group 5. Feeding methods on PICU
Is quick bolus feeding (for example 200ml in 30minutes) better than slow continuous pump feeding (for example 20ml every hour) in children on breathing machines?

Group 1. Energy (calories) needs for children on PICU
How should we calculate energy (calorie) needs for teenagers on breathing machines?

Group 5. Feeding methods on PICU
Is stomach ultrasound a more accurate way to measure stomach volume compared to aspirating stomach content every few hours?

Group 6. Extra vitamin supplementation on PICU
Should anti-oxidants vitamins be supplemented to help reduce illness related stress (inflammation) in children with an infection on a breathing machine?

Final Survey for The Paediatric Intensive Care (PICU) Nutrition Priority Setting Partnership (PSP) James Lind Alliance

Question Title

* 1. It is important that we know a little about you, so that we can make sure different people from across the UK are giving us their views. In relation to Paediatric Intensive Care, which of the following role best describes you?

Question Title

* 1. It is important that we know a little about you, so that we can make sure different people from across the UK are giving us their views.

In relation to Paediatric Intensive Care, which of the following role best describes you?