Paediatric Intensive Care Nutrition Protocol
Purpose of the PSP and background
The purpose of this protocol is to clearly set out the aims, objectives and commitments for the Paediatric Intensive Care Nutrition Priority Setting Partnership (PSP) in line with James Lind Alliance (JLA) principles. The Protocol is a JLA requirement and will be published on the PSP’s page of the JLA website. The Steering Group will review the Protocol regularly and any updated version will be sent to the JLA.
The JLA is a non-profit making initiative, established in 2004. It brings patients, carers and clinicians together in PSPs. These PSPs identify and prioritise the evidence uncertainties, or ‘unanswered questions’, that they agree are the most important for research in their topic area. Traditionally PSPs have focused on uncertainties about the effects of treatments, but some PSPs have chosen to broaden their scope beyond that. The aim of a PSP is to help ensure that those who fund health research are aware of what really matters to patients, carers and clinicians. The National Institute for Health Research (NIHR – www.nihr.ac.uk) coordinates the infrastructure of the JLA to oversee the processes for PSPs, based at the NIHR Evaluation, Trials and Studies Coordinating Centre (NETSCC), University of Southampton.
Optimal nutritional support is of paramount importance for critically ill children admitted to the paediatric intensive care unit (PICU); critically ill children have limited macronutrient stores and relatively higher energy requirements than adults.  Bedside nutrition practice on PICU continues to be driven largely by expert opinion or consensus, with very few practices supported by high-level evidence. 
Pre-illness nutritional state, affects both the ability to perform rehabilitation and subsequent clinical outcomes during and beyond the PICU stay. Furthermore, PICU acquired faltering growth is a well-documented phenomena, the consequence of profound metabolic shift in response to inflammatory stress and catabolism, coupled with severe fluid restriction resulting in loss of body mass.  Other contributing issues to faltering growth on PICU include medical interventions and procedures, trial extubations and perceived feed intolerance.  The adverse clinical outcomes of malnutrition have been attributed to electrolyte and nutrient deficiencies, immunosuppression, muscle weakness, a longer duration of mechanical ventilation and higher risk of hospital-acquired infection, all of which increase the risk of mortality. 
Compliance with basic anthropometry has improved over the last decade although use of nutritional screening tools varies considerably and raises questions about the usefulness of current tools in clinical practice and whether measurement of height, weight and assessment of intake and nutrition risk may be more appropriate. 
Aims, objectives and scope of the PSP
The aim of the Paediatric Intensive Care Nutrition PSP is to identify the unanswered questions about Paediatric Intensive Care Nutrition from patient, carer and clinical perspectives and then prioritise those that patients, carers and clinicians agree are the most important for research to address.
The objectives of the PSP are to:
- work with patients, carers and clinicians to identify uncertainties about nutrition and Paediatric Intensive Care Nutrition.
- to agree by consensus a prioritised list of those uncertainties, for research
- to publicise the results of the PSP and process
- to take the results to research commissioning bodies to be considered for funding.
The scope of the Paediatric Intensive Care Nutrition PSP is defined as:
All research uncertainties related to nutrition in infants and children on an intensive care setting within the United Kingdom will be considered in scope. All stages of the patient pathway will be eligible including the immediate and post intensive care. The decisions about whether submissions will be in or out-of-scope will be decided by the steering group.
The PSP will exclude from its scope questions about:
- Non nutritional related uncertainties
- Non nutritional related uncertainties related to intensive care medicine
- Preterm infants <35/ 40
The Steering Group is responsible for discussing what implications the scope of the PSP will have for the evidence-checking stage of the process. Resources and expertise will be put in place to do this evidence checking.
The Steering Group
The Steering Group includes membership of patients and carers and clinicians , as individuals or representatives from a relevant group.
The Paediatric Intensive Care Nutrition PSP will be led and managed by a Steering Group involving the following:
Dr Graeme O’Connor, Research Lead for Dietetics Great Ormond Street Hospital
Suzannah Kinsella, James Lind Alliance Adviser and Chair of the Steering Group
Professor Nilesh M. Mehta, Harvard Medical School, Associate Medical Director, Critical Care, Director, Critical Boston Children's Hospital:
Professor Mark Peters, Research lead Intensive care medicine, Great Ormond Street Hospital. London
Dr Harish Bangalore, Consultant Intensivist, Great Ormond Street Hospital. London
Dr Luise Marino, Chair of Paediatric Intensive Care Dietitians Interest Group: Southampton University Hospital
Dr Julie Lanigan, British Dietetic Association – Paediatric Group representative. Institute of Child Health/ University College London
Dr Lyvonne Tume Reader (Associate Professor) in Child Health (Critical Care Nursing) School of Health & Society, University of Salford.
Alex Stewart, research speech therapist
Simon Gates, research physiotherapist
Vanessa Kitching: Information Specialists
Patient and carer representatives:
Mr Alan Walsh
Mr and Mrs Mistry (Rajesh and Rohini)
British Dietetic Association
Organisations and individuals will be invited to be involved with the PSP as partners – listed below. Partners are organisations or groups who will commit to supporting the PSP, promoting the process and encouraging their represented groups or members to participate. Organisations which can reach and advocate for these groups will be invited to become involved in the PSP. Partners represent the following groups:
- people who have had nutrition related complications on Paediatric Intensive Care
- carers of people who have had Nutrition related complications Paediatric Intensive Care
- health and social care professionals - with clinical experience of Nutrition Paediatric Intensive Care.
Some organisations may be judged by the JLA or the Steering Group to have conflicts of interest. These may be perceived to potentially cause unacceptable bias as a member of the Steering Group. As this is likely to affect the ultimate findings of the PSP, those organisations will not be invited to participate. It is possible, however, that interested parties may participate in a purely observational capacity when the Steering Group considers it may be helpful.
The methods the PSP will use
This section describes a schedule of proposed steps through which the PSP aims to meet its objectives. The process is iterative and dependent on the active participation and contribution of different groups. The methods used in any step will be agreed through consultation between the Steering Group members, guided by the PSP’s aims and objectives. More details of the method are in the Guidebook section of the JLA website at www.jla.nihr.ac.uk where examples of the work of other JLA PSPs can be seen.
Step 1: Identification and invitation of potential partners
Potential partner organisations will be identified through a process of peer knowledge and consultation, through the Steering Group members’ networks. Potential partners will be contacted and informed of the establishment and aims of the Nutrition Paediatric Intensive Care PSP.
Step 2: Awareness raising
PSPs will need to raise awareness of their proposed activity among their patient, carer and clinician communities, in order to secure support and participation. Depending on budget, this may be done by a face-to-face meeting, or there may be other ways in which the process can be launched, e.g. via social media. It may be carried out as part of steps 1 and/or 3. The Steering Group should advise on when to do this. Awareness raising has several key objectives:
- to present the proposed plan for the PSP
- to generate support for the process
- to encourage participation in the process
- to initiate discussion, answer questions and address concerns.
Step 3: Identifying evidence uncertainties
A national scoping survey will asked respondents to submit their research uncertainties relating to Paediatric Intensive Care Nutrition. PSP will carry out a consultation to gather uncertainties from patients, carers and clinicians. A period of 18 months will be given to complete this exercise (which may be revised by the Steering Group if required). The survey will be circulated via the steering group and their partner organisations as an open invitation. The survey will be available in both paper and online formats
The Steering Group will use the following methods to reach the target groups
- developed online and paper surveys which will be disseminated via national interest groups that are affiliated with intensive care including:
- PICAnet https://www.picanet.org.uk/
- British Dietetic Association https://www.bda.uk.com/
- British Dietetics Association – Paediatric Group and PICS –Nutrition Group
- Paediatric Intensive Care Society
- Patient Organisations:
- GOSH Patient Advisory Group
- Facebook Parent Interest Groups
Existing sources of evidence uncertainties may also be searched. Proposed methodology to systematically review example topics. Identify whether systematic review is the most suitable evaluation is valuable, but there may be others.
Step 4: Refining questions and uncertainties
The consultation process will produce ‘raw’ questions and comments indicating patients’, carers’ and clinicians’ areas of uncertainty. These raw questions will be categorised and refined by GOC, KT and VK into summary questions which are clear, addressable by research, and understandable to all. The overarching themes and subthemes from the thematic analysis will be used to generate a smaller number of representative research questions, so-called ‘indicative questions’. These will be derived from the original submissions and will be designed to summarise the submissions within each subtheme/theme. The information specialist and GOC will undertake this process.
Similar or duplicate questions will be combined where appropriate. Out-of-scope and ‘answered’ submissions will be compiled separately. The Steering Group will have oversight of this process to ensure that the raw data is being interpreted appropriately and that the summary questions are being worded in a way that is understandable to all audiences. The JLA Adviser will observe to ensure accountability and transparency.
This will result in a long list of in-scope summary questions. These are not research questions and to try and word them as such may make them too technical for a non-research audience. They will be framed as researchable questions that capture the themes and topics that people have suggested.
The summary questions will then be checked against evidence to determine whether they have already been answered by research. This will be done by ALL SG . The PSP will complete the JLA Question Verification Form, which clearly describes the process used to verify the uncertainty of the questions, before starting prioritisation. The Question Verification Form includes details of the types and sources of evidence used to check uncertainty. The Question Verification Form should be published on the JLA website as soon as it has been agreed to enable researchers and other stakeholders to understand how the PSP has decided that its questions are unanswered, and any limitations of this.
Questions that are not adequately addressed by previous research will be collated and recorded on a standard JLA template by GOC. This will show the checking undertaken to make sure that the uncertainties have not already been answered. The data should be submitted to the JLA for publication on its website on completion of the priority setting exercise, taking into account any changes made at the final workshop, in order to ensure that PSP results are publicly available.
The Steering Group will also consider how it will deal with submitted questions that have been answered, and questions that are out of scope.
Step 5: Prioritisation – interim and final stages
The aim of the final stage of the priority setting process is to prioritise through consensus the identified uncertainties about Nutrition Paediatric Intensive Care. This will involve input from patients, carers and clinicians. The JLA encourages PSPs to involve as wide a range of people as possible, including those who did and did not contribute to the first consultation. There are usually two stages of prioritisation.
1. Interim prioritisation is the stage where the long list of questions is reduced to a shorter list that can be taken to the final priority setting workshop. This is aimed at a wide audience, and is done using similar methods to the first consultation. With the JLA’s guidance, the Steering Group will agree the method and consider how best to reach and engage patients, carers and clinicians in the process. The most highly ranked questions (around 25) will be taken to a final priority setting workshop. Where the interim prioritisation does not produce a clear ranking or cut off point, the Steering Group will decide which questions are taken forwards to the final prioritisation.
2. The final priority setting stage is generally a one-day workshop facilitated by the JLA. With guidance from the JLA and input from the Steering Group, up to 30 patients, carers and clinicians will be recruited to participate in a day of discussion and ranking, to determine the top 10 questions for research. All participants will declare their interests. The Steering Group will advise on any adaptations needed to ensure that the process is inclusive and accessible.
Dissemination of results
The Steering Group will identify audiences with which it wants to engage when disseminating the results of the priority setting process, such as researchers, funders and the patient and clinical communities. They will need to determine how best to communicate the results and who will take responsibility for this. Previous PSPs’ outputs have included academic papers, lay reports, infographics, conference presentations and videos for social media.
It should be noted that the priorities are not worded as research questions. The Steering Group should discuss how they will work with researchers and funders to establish how to address the priorities and to work out what the research questions are that will address the issues that people have prioritised. The dissemination of the results of the PSP will be led by GOC.
The JLA encourages PSPs to report back about any activities that have come about because of the PSP, including funded research. Please send any details to firstname.lastname@example.org.
Agreement of the Steering Group
The Paediatric Intensive Care Nutrition PSP Steering Group agreed the content and direction of this Protocol on August 2020
1. Pollack, M.M., U.E. Ruttimann, and J.S. Wiley, Nutritional depletions in critically ill children: associations with physiologic instability and increased quantity of care. JPEN J Parenter Enteral Nutr, 1985. 9(3): p. 309-13.
2. Mehta, N.M., et al., Guidelines for the Provision and Assessment of Nutrition Support Therapy in the Pediatric Critically Ill Patient: Society of Critical Care Medicine and American Society for Parenteral and Enteral Nutrition. Journal of Parenteral and Enteral Nutrition, 2017. 41(5): p. 706-742.
3. Mehta, N.M., Corkins, M. R., Lyman, B. , Malone, A. , Goday, P. S., Carney, L. (., Monczka, J. L., Plogsted, S. W., Schwenk, W. F, Defining Pediatric Malnutrition - A Paradigm Shift Toward Etiology-Related Definitions. Journal of Parenteral and Enteral Nutrition, 2013. 37(4): p. 460-481.
4. Skillman, H.E. and C.A. Zebuhr, Optimal Nutrition for Acute Rehabilitation in the PICU. J Pediatr Intensive Care, 2015. 04(04): p. 194-203.
5. Valla, F.V., et al., Nutritional Status Deterioration Occurs Frequently During Children’s ICU Stay*. Pediatric Critical Care Medicine, 2019. 20(8): p. 714-721.
6. Marino, L.V. and R.M. Beattie, Compliance with nutrition screening in a children’s hospital. Archives of Disease in Childhood, 2018. 103(8): p. 798.