{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,12]],"date-time":"2026-10-12T18:10:20Z","timestamp":1791828620779,"version":"4.3.4"},"reference-count":38,"publisher":"MDPI AG","issue":"10","license":[{"start":{"date-parts":[[2025,10,9]],"date-time":"2025-10-09T00:00:00Z","timestamp":1759968000000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"name":"Association of Paediatric Palliative Medicine"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Children"],"abstract":"<jats:p>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.<\/jats:p>","DOI":"10.3390\/children12101359","type":"journal-article","created":{"date-parts":[[2025,10,9]],"date-time":"2025-10-09T16:54:31Z","timestamp":1760028871000},"page":"1359","update-policy":"https:\/\/doi.org\/10.3390\/mdpi_crossmark_policy","source":"Crossref","is-referenced-by-count":1,"title":["Gastrointestinal Dystonia in Children and Young People with Severe Neurological Impairment &amp; Palliative Care Needs: A Systematic Review"],"prefix":"10.3390","volume":"12","author":[{"ORCID":"https:\/\/orcid.org\/0009-0002-9618-4715","authenticated-orcid":false,"given":"Timothy","family":"Warlow","sequence":"first","affiliation":[{"name":"Department of Specialist Paediatric Palliative Care, University Hospitals Southampton & Naomi House and Jacksplace Hospices, CG63 Southampton General Hospital, Tremona Road, Southampton SO166YD, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jill","family":"Yates","sequence":"additional","affiliation":[{"name":"NHS Lothian, Edinburgh EH4 2XU, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-6438-9399","authenticated-orcid":false,"given":"Naomi","family":"Taylor","sequence":"additional","affiliation":[{"name":"Martin House Children\u2019s Hospice, Wetherby LS23 6TX, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-1306-1721","authenticated-orcid":false,"given":"Gemma","family":"Villanueva","sequence":"additional","affiliation":[{"name":"Cochrane Response, London W1G 0AN, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Bindu","family":"Koodiyedath","sequence":"additional","affiliation":[{"name":"Northampton General Hospital, Northampton NN1 5BD, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0001-8419-4919","authenticated-orcid":false,"given":"Fiona","family":"McElligott","sequence":"additional","affiliation":[{"name":"Children\u2019s Health Ireland, D01 YC67 Dublin, Ireland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-8309-1707","authenticated-orcid":false,"given":"Susie","family":"Holt","sequence":"additional","affiliation":[{"name":"Alder Hey Children\u2019s NHS Foundation Trust, Liverpool L14 5AB, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-8542-4942","authenticated-orcid":false,"given":"Anna-Karenia","family":"Anderson","sequence":"additional","affiliation":[{"name":"Royal Marsden Hospital NHS Trust, London SW3 6JJ, UK"},{"name":"Shooting Star Chase Hospice, Addlestone KT13 9UQ, Surrey, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"1968","published-online":{"date-parts":[[2025,10,9]]},"reference":[{"key":"ref_1","doi-asserted-by":"crossref","first-page":"443","DOI":"10.1542\/peds.2009-2959","article-title":"Neonatal Outcomes of Extremely Preterm Infants From the NICHD Neonatal Research Network","volume":"126","author":"Stoll","year":"2010","journal-title":"Pediatrics"},{"key":"ref_2","first-page":"A9","article-title":"O13 Working definition of gastrointestinal dystonia of severe neuro-disability; outcome of the BSPGHAN\/BAPM\/BAPS\/APPM\/BPNA appropriateness panel","volume":"13","author":"Barclay","year":"2022","journal-title":"Frontline Gastroenterol."},{"key":"ref_3","doi-asserted-by":"crossref","first-page":"1128","DOI":"10.1016\/j.clnu.2014.11.009","article-title":"The continued rise of paediatric home parenteral nutrition use: Implications for service and the improvement of longitudinal data collection","volume":"34","author":"Barclay","year":"2015","journal-title":"Clin. 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