Children and young people with severe neuro-disabling conditions can experience debilitating distress from enteral feeding. When this occurs in the absence of commonly associated problems (reflux/constipation); the term ‘gastrointestinal dystonia’ now has an agreed definition.¹ We aim to describe the development of an agreed algorithm on nutritional interventions GID from the described¹ RAND panel.

In brief² a writers group structured the questions for expert survey, based on the limited written evidence and their added professional experience. A panel of 27 experts in their field were assembled from 5 stakeholder groups including: Gastroenterology, Neurology/Neurodisability, Surgery, Palliative Care and Allied Health Professionals. Geographic representation was from 13 UK specialist centres (including all 4 nations) and 1 centre from Republic of Ireland to a. The panel rated the appropriateness of definition, investigations and management of GID. A scale of 1–9 enabled scoring of 1–3 to indicate inappropriate, 4–6 uncertain, 7–9 appropriate as criteria for recommendation. Panel agreement index was calculated using a continuous likelihood ratio, with <1 indicated ‘general agreement’ and >1 ‘no agreement’. Results were discussed at a moderated meeting before a revised post meeting survey was complete.

27/27 panellists answered questions on nutritional interventions (appropriateness scale/disagreement index). Reducing bolus size (8.0/0.37), continuous feeding (8.0/0.16), empiric trial of hydrolysed feed (7.0/0.24) were all considered appropriate early interventions in GID. Panel agreed a clear preference for the use of blenderised diet ahead of post pyloric feeding (8.0/0.16), due to level of symptomatic benefits, tolerance parental empowerment and cost. The use of temporal undernutrition (permissive feeding) to balance quality of life, or to allow time to consider goals and treatment priorities was appropriate (8.0/0.03). Considering minimal oral feeding for comfort/enjoyment despite aspiration risk was also advocated for (7.0/0.22). From the output the following nutritional strategies algorithm was devised (figure 1).

We present the first coherent nutritional treatment algorithm in GID devised from the best available evidence and large expert panel opinion. Consensus around the increasing role for blenderised diet is welcome to health professionals and parents who have pioneered this treatment. However there are implication for health care resources, institutions such as schools and community care. Resource education and local guidelines will be required in order to further progress this excellent intervention.

References

1. Barclay A R, Meade S, Richards C, et al. Frontline Gastroenterol 2022;suppl 1:A9–10.

2. The RAND/UCLA Appropriateness method user`s manual. (Accessed December 22, 2022, https://www.rand.org/pubs/monograph_reports/MR1269.html.)

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Abstract OC67 Figure 1