Gastrointestinal Dystonia in Children and Young People with Severe Neurological Impairment & Palliative Care Needs: A Systematic Review

TL;DR

This review explores how to manage gastrointestinal dystonia in children with severe neurological issues and palliative care needs, finding limited direct evidence but some indirect guidance.

Contribution

The first systematic review of evidence for managing gastrointestinal dystonia in palliative care patients with severe neurological impairment.

Findings

Low-quality, indirect evidence exists for symptom management, hydration, and end-of-life care in gastrointestinal dystonia.

A multidisciplinary, coordinated approach is essential for managing this heterogeneous condition.

Current evidence is insufficient, but initial practice suggestions and further research directions are proposed.

Abstract

What are the main findings?
This study is the first systematic review of the evidence for the management of gastrointestinal dystonia in patients with palliative care needs.High certainty evidence is currently lacking, but a significant body of indirect ev-idence exists upon which initial suggestions for practice and further study can be based.

This study is the first systematic review of the evidence for the management of gastrointestinal dystonia in patients with palliative care needs.

High certainty evidence is currently lacking, but a significant body of indirect ev-idence exists upon which initial suggestions for practice and further study can be based.

What is the implication of the main finding?
Gastrointestinal dystonia is a heterogeneous condition for which a well co-ordinated, holistic, multidisciplinary approach to management is required.Clear identification of goals of care, use of advance care planning, and a rational, systematic approach to symptom management are the mainstay of the treatment approach.

Gastrointestinal dystonia is a heterogeneous condition for which a well co-ordinated, holistic, multidisciplinary approach to management is required.

Clear identification of goals of care, use of advance care planning, and a rational, systematic approach to symptom management are the mainstay of the treatment approach.

Background: Increasing numbers of young people with severe neurological impairment are suffering from gastrointestinal symptoms, which may result in nutritional failure and ultimately death. Gastrointestinal dystonia is a recently described clinical diagnosis amongst patients with severe neurological impairment, and no systematic review of existing evidence currently exists. Aim: To conduct a systematic review of existing evidence for the management of gastrointestinal dystonia in children and young people with severe neurological impairment and palliative care needs. Method: A systematic review assessing pharmacological and non-pharmacological treatments was undertaken using standard Cochrane methodology. We searched Cochrane CENTRAL, MEDLINE, EMBASE, and PsycInfo. All databases were searched from inception, and no language restrictions were used. Results: 1580 references were identified. After abstract screening, 56 references were reviewed at full text, and a case report and case series were identified for inclusion. Low-quality, indirect evidence exists for the management of gastrointestinal dystonia, including symptom management, hydration and nutrition decisions, and end-of-life care. Conclusions: There is a paucity of existing evidence directly relating to gastrointestinal dystonia, but low-quality indirect evidence from studies of children with severe neurological impairment and gastrointestinal symptoms exist, which may begin to inform clinical practice.

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