Skip to main content

Advertisement

Log in

Interventions for Feeding and Swallowing Disorders in Adults with Intellectual Disability: A Systematic Review of the Evidence

  • Review
  • Published:
Dysphagia Aims and scope Submit manuscript

Abstract

Feeding and swallowing disorders are prevalent in adults with Intellectual Disability (ID) and can potentially lead to discomfort, malnutrition, dehydration, aspiration, and choking. Most common interventions include: diet modification, compensatory strategies, swallowing therapy, and non-oral feeding. Despite their common use, the research evidence for these interventions is lacking. The current study aimed to systematically review the evidence for the safety and the effectiveness of interventions for feeding and swallowing disorders in adults with ID. Seven electronic databases, conference proceedings, and reference lists of relevant studies were reviewed from online availability to March 2019, with no language restrictions. Eligibility criteria encompassed experimental or non-experimental study design, adults (> 18 years) with ID and feeding and/or swallowing disorders (any etiology and severity) and any intervention for feeding and/or swallowing disorders. Methodological quality was assessed by two independent reviewers using the Downs and Black checklist. Four articles met the inclusion criteria. All included studies considered enteral feeding as an intervention strategy and had a retrospective observational design. Overall, included studies reported positive change in nutritional status and a high incidence of adverse events following enteral feeding initiation. Risk of bias was high with variability in methodological quality. The safety and effectiveness of interventions for feeding and swallowing in adults with ID is unclear. This review highlights the lack of evidence-based practice in this area. Directions for further research are provided. Before enteral feeding initiation, risks and benefits should be appropriately balanced on an individual basis, and caregivers should be involved in the decision-making process.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Fig. 1

Adapted from Moher et al. (2009)

Similar content being viewed by others

References

  1. NPSA. Learning disabilities dysphagia protocol for general practitioners. London: National Patient Safety Agency; 2007.

    Google Scholar 

  2. Chadwick DD, Jolliffe J. A descriptive investigation of dysphagia in adults with intellectual disabilities. J Intellect Disabil Res. 2009;53(1):29–43.

    Article  PubMed  CAS  Google Scholar 

  3. Robertson J, Chadwick DD, Baines S, Emerson E, Hatton C. People with intellectual disabilities and dysphagia. Disabil Rehabil. 2018;40(11):1345–60.

    Article  PubMed  Google Scholar 

  4. Sheppard JJ, Hochman R, Baer C. The Dysphagia Disorder Survey: Validation of an assessment for swallowing and feeding function in developmental disability. Res Dev Disabil. 2014;35(5):929–42.

    Article  PubMed  Google Scholar 

  5. Robertson J, Chadwick DD, Baines S, Emerson E, Hatton C. Prevalence of dysphagia in people with intellectual disability: a systematic review. Intellect Dev Disabil. 2017;55(6):377–91.

    Article  PubMed  Google Scholar 

  6. Gittins D, Rose N. An audit of adults with profound and multiple learning disabilities within a West Midlands Community Health Trust: Implications for service development. Br J Learn Disabil. 2008;36(1):38–47.

    Article  Google Scholar 

  7. Matson JL, Fodstad JC, Boisjoli JA. Cutoff scores, norms and patterns of feeding problems for the Screening Tool of Feeding Problems (STEP) for adults with intellectual disabilities. Res Dev Disabil. 2008;29(4):363–72.

    Article  PubMed  Google Scholar 

  8. Hollins S, Attard MT, Frunhofer N, McGuigan S, Sedgwick P. Mortality in people with learning disability: risks, causes, and death certificate findings in London. Dev Med Child Neurol. 1998;40(1):50–6.

    PubMed  CAS  Google Scholar 

  9. Cooper S, Melville C, Morrison J. People with intellectual disabilities. BMJ. 2004;329:414.

    Article  PubMed  PubMed Central  Google Scholar 

  10. Heslop P, Blair PS, Fleming P, Hoghton M, Marriott A, Russ L. The Confidential Inquiry into premature deaths of people with intellectual disabilities in the UK: a population-based study. Lancet. 2014;383(9920):889–95.

    Article  PubMed  Google Scholar 

  11. Trollor J, Srasuebkul P, Xu H, Howlett S. Cause of death and potentially avoidable deaths in Australian adults with intellectual disability using retrospective linked data. BMJ Open. 2017;7(2):e013489.

    Article  PubMed  PubMed Central  Google Scholar 

  12. O’Leary L, Cooper SA, Hughes-McCormack L. Early death and causes of death of people with intellectual disabilities: a systematic review. J Appl Res Intellect Disabil. 2018;31(3):325–42.

    Article  PubMed  Google Scholar 

  13. Thacker A, Abdelnoor A, Anderson C, White A, Hollins S. Indicators of choking risk in adults with learning disabilities: a questionnaire survey and interview study. Disabil Rehabil. 2008;30(15):1131–8.

    Article  PubMed  Google Scholar 

  14. Kennedy M, McCombie L, Dawes P, McConnell KN, Dunnigan MG. Nutritional support for patients with intellectual disability and nutrition/dysphagia disorders in community care. J lntellect Disabil Res. 1997;41(5):430–6.

    Article  Google Scholar 

  15. Perez CM, Ball SL, Wagner AP, Clare CH, Holland AJ, Redley M. The incidence of healthcare use, ill health and mortality in adults with intellectual disabilities and mealtime support needs. J Intellect Disabil Res. 2015;59(7):638–52.

    Article  PubMed  CAS  Google Scholar 

  16. Chadwick DD, Joliffe J, Goldbart J, Burton MH. Barriers to caregiver compliance with eating and drinking recommendations for adults with intellectual disabilities and dysphagia. J Appl Res Intellect Disabil. 2006;19(2):153–62.

    Article  Google Scholar 

  17. Sheppard JJ, Liou J, Hochman RSL, Langlois D. Nutritional correlates of dysphagia in individuals institutionalized with mental retardation. Dysphagia. 1988;3(2):85–8.

    Article  PubMed  CAS  Google Scholar 

  18. Sheppard JJ. Developmental disability and swallowing disorders in adults. In: Cichero J, Murdoch B, editors. Dysphagia: foundations, theory and practice. Chichester: Wiley; 2006. p. 299–318.

    Google Scholar 

  19. Rosenthal SR, Sheppard JJ, Lotze M. Dysphagia and the child with developmental disabilities: medical, clinical, and family interventions. San Diego: Singular Pub. Group; 1995.

    Google Scholar 

  20. Dziewas R, Warnecke T, Schnabel M, Ritter M, Nabavi DG, Schilling M, Ringelstein EB, Reker T. Neuroleptic-induced dysphagia: case report and literature review. Dysphagia. 2007;22(1):63–7.

    Article  PubMed  Google Scholar 

  21. Crawford H. Dysphagia and people with profund intellectual and multiple disabilities. In: Pawlyn J, Carnaby S, editors. Profound intellectual and multiple disabilities: nursing complex needs. Oxford: Wiley-Blackwell; 2008.

    Chapter  Google Scholar 

  22. IASLT. Guidelines for speech and language therapists on assessment and management of eating, drinking and swallowing difficulties (EDS) in adults with intellectual disability (AWID). Irish Association of Speech and Language Therapists. 2010. http://www.iaslt.ie.

  23. Samuels R, Chadwick DD. Predictors of asphyxiation risk in adults with intellectual disabilities and dysphagia. J Intellect Disabil Res. 2006;50(5):362–70.

    Article  PubMed  CAS  Google Scholar 

  24. Baladin S, Hemsley B, Hanley L, Sheppard JJ. Understanding mealtime changes for adults with cerebral palsy and the implications for support services. J Intellect Dev Disabil. 2009;34(3):197–206.

    Article  Google Scholar 

  25. Chadwick DD, Joliffe J, Goldbart J. Adherence to eating and drinking guidelines for adults with intellectual disabilities and dysphagia. Am J Ment Retard. 2003;108(3):202–11.

    Article  PubMed  Google Scholar 

  26. Harding C, Wright J. Dysphagia: the challenge of managing eating and drinking difficulties in children and adults who have learning disabilities. Tizard Learn Disabil Rev. 2010;15(1):4–13.

    Article  Google Scholar 

  27. Ball SL, Panter SG, Redley M, Proctor CA, Byrne K, Clare IC. The extent and nature of need for mealtime support among adults with intellectual disabilities. J Intellect Disabil Res. 2012;56(4):382–401.

    Article  PubMed  CAS  Google Scholar 

  28. Sheppard JJ. Managing dysphagia in mentally retarded adults. Dysphagia. 1991;6(2):83–7.

    Article  PubMed  CAS  Google Scholar 

  29. Waldron C, MacGiolla Phadraig C, Nunn J, Comiskey C, Donnelly-Swift E, Guerin S, Clarke MJ (2017) Oral hygiene programmes for people with intellectual disabilities (Protocol). Cochrane Database Syst Rev 4.

  30. Langmore SE, Pisegna JM. Efficacy of exercises to rehabilitate dysphagia: a critique of the literature. Int J Speech Lang Pathol. 2015;17(3):222–9.

    Article  PubMed  Google Scholar 

  31. Arvedson JC, Clark H, Lazarus C, Schooling T, Frymark T. The effects of oral-motor exercises on swallowing in children: an evidence-based systematic review. Dev Med Child Neurol. 2010;52(11):1000–13.

    Article  PubMed  Google Scholar 

  32. Howseman T. Dysphagia in people with learning disabilities. Learn Disabil Pract. 2013;16(9):14–22.

    Article  Google Scholar 

  33. Chadwick DD. Dysphagia management for people with intellectual disabilities: practitioner identified processes, barriers, and solutions. J Policy Pract Intellect Disabil. 2017;14(4):319–31.

    Article  Google Scholar 

  34. Hemsley B, et al. A call for dysphagia-related safety incident research in people with developmental disabilities. J Intellect Dev Disabil. 2015;40(1):99–103.

    Article  Google Scholar 

  35. Moher D, Liberati A, Tetzlaff J, Altman DG, The PRISMA Group. Preferred reporting items for systematic reviews and meta-analyses: the PRISMA statement. PLoS Med. 2009;6(7):e1000097.

    Article  PubMed  PubMed Central  Google Scholar 

  36. Downs S, Black N. The feasibility of creating a checklist for the assessment of the methodological quality both of randomised and non-randomised studies of health care interventions. J Epidemiol Community Health. 1998;52(6):377–84.

    Article  PubMed  PubMed Central  CAS  Google Scholar 

  37. Viswanathan M, Ansari MT, Berkman ND, Chang S, Hartling L, McPheeters LM, Santaguida PL, et al. Assessing the Risk of Bias of Individual Studies in Systematic Reviews of Health Care Interventions. Agency for Healthcare Research and Quality Methods Guide for Comparative Effectiveness Reviews. AHRQ Publication No. 12-EHC047-EF. 2012. www.effectivehealthcare.ahrq.gov/.

  38. Silverman SR, Schertz LA, Yuen HK, Lowman JD, Bickel CS. Systematic review of the methodological quality and outcome measures utilized in exercise interventions for adults with spinal cord injury. Spinal Cord. 2012;50(10):718–27.

    Article  PubMed  CAS  Google Scholar 

  39. Gray DS, Kimmel D. Enteral tube feeding and pneumonia. Am J Ment Retard. 2006;111(2):113–20.

    Article  PubMed  Google Scholar 

  40. Lee L, MacPherson M. Long-term percutaneous endoscopic gastrostomy feeding in young adults with multiple disabilities. Intern Med J. 2010;40(6):411–8.

    Article  PubMed  CAS  Google Scholar 

  41. Ayres L, Black C, Scheepers M, Shaw I. An audit to evaluate the safety and efficacy of percutaneous endoscopic gastrostomy placement in patients with learning disabilities. Br J Learn Disabil. 2014;43(3):201–7.

    Article  Google Scholar 

  42. Davout A, Rech C, Hanachi M, Barthod F, Melchior JC, Crenn P. Feasibility and results of pull-percutaneous endoscopic gastrostomy for enteral nutrition in adults with severe cerebral palsy. Clin Nutr. 2016;35(4):918–23.

    Article  PubMed  Google Scholar 

  43. Mathus-Vliegen EMH, Koning H, Taminiau JAJM, Moorman-Voestermans CGM. Percutaneous endoscopic gastrostomy and gastrojejunostomy in psychomotor retarded subjects: a follow-up covering 106 patient years. J Pediatr Gastroenterol Nutr. 2001;33(4):488–94.

    Article  PubMed  CAS  Google Scholar 

  44. Blumenstein I, Shastri YM, Stein J. Gastroenteric tube feeding: techniques, problems and solutions. World J Gastroenterol. 2014;20(26):8505–24.

    Article  PubMed  PubMed Central  Google Scholar 

  45. Bui HD, Dang CV, Chaney RH, Vergara LM. Does gastrostomy and fundoplication prevent aspiration pneumonia in mentally retarded persons? Am J Ment Retard. 1989;94(1):16–9.

    PubMed  CAS  Google Scholar 

  46. Lazarus BA, Murphy JB, Culpepper L. Aspiration associated with long-term gastric versus jejunal feeding: a critical analysis of the literature. Arch Phys Med Rehabil. 1990;71(1):46–53.

    PubMed  CAS  Google Scholar 

  47. Cech AC, Morris JB, Mullen JL, Crooks JW. Long-term enteral access in aspiration-prone patients. J Intensive Care Med. 1995;10(4):179–86.

    Article  PubMed  CAS  Google Scholar 

  48. Cogen R, Weinryb J. Aspiration pneumonia in nursing home patients fed via gastrostomy tubes. Am J Gastroenterol. 1989;84(12):1509–12.

    PubMed  CAS  Google Scholar 

  49. Nishiwaki S, et al. Clinical analysis of gastroesophageal reflux after PEG. Gastrointest Endosc. 2006;64(6):890–6.

    Article  PubMed  Google Scholar 

  50. Böhmer C, Klinkenberg-Knol E, Niezen-de Boer M, Meuwissen S. Gastroesophageal reflux disease in intellectually disabled individuals: how often, how serious, how manageable? Am J Gastroenterol. 2000;95(8):1868–72.

    Article  PubMed  Google Scholar 

  51. Galli-Carminati G, Chauvet I, Deriaz N. Prevalence of gastrointestinal disorders in adult clients with pervasive developmental disorders. J Intellect Disabil Res. 2006;50(10):711–8.

    Article  PubMed  CAS  Google Scholar 

  52. Borowitz S, Sutphen J, Hutcheson R. Percutaneous endoscopic gastrostomy without an antireflux procedure in neurologically disabled children. Clin Pediatr. 1997;36(1):25–9.

    Article  CAS  Google Scholar 

  53. Thomson M, Rao P, Rawat D, Wenzl T. Percutaneous endoscopic gastrostomy and gastro-oesophageal reflux in neurologically impaired children. World J Gastroenterol. 2011;17(2):191–6.

    Article  PubMed  PubMed Central  Google Scholar 

  54. Taylor H. Pneumonia frequencies with different enteral tube feeding access sites. Am J Ment Retard. 2002;107(3):175–80.

    Article  PubMed  Google Scholar 

  55. Sullivan PB, Juszczak E, Bachlet AM, Lambert B, Vernon-Roberts A, Grant HW, Eltumi M, McLean L, Alder N, Thomas AG. Gastrostomy tube feeding in children with cerebral palsy: a prospective, longitudinal study. Dev Med Child Neurol. 2005;47(2):77–85.

    Article  PubMed  Google Scholar 

  56. Catto-Smith A, Jimenez S. Morbidity and mortality after percutaneous endoscopic gastrostomy in children with neurological disability. J Gastroenterol Hepatol. 2006;21(4):734–8.

    Article  PubMed  Google Scholar 

  57. Scott F, Beech R, Smedley F, Timmis L, Stokes E, Jones P, Roffe C, Bowling TE. Prospective, randomized, controlled, single-blind trial of the costs and consequences of systematic nutrition team follow-up over 12 mo after percutaneous endoscopic gastrostomy. Nutrition. 2005;21(11–12):1071–7.

    Article  PubMed  Google Scholar 

  58. NICE. Nutrition support for adults: oral nutrition support, enteral tube feeding and parenteral nutrition. London: National Institute for Clinical Excellence; 2006.

    Google Scholar 

  59. Westaby D, Young A, O’Toole P, Smith G, Sanders DS. The provision of a percutaneously placed enteral tube feeding service. Gut. 2010;59(12):1592–605.

    Article  PubMed  Google Scholar 

  60. Krahn GL, Hammond L, Turner A. A cascade of disparities: health and health care access for people with intellectual disabilities. Ment Retard Dev Disabil Res Rev. 2006;12(1):70–82.

    Article  PubMed  Google Scholar 

  61. MENCAP. Death by indifference: following up the treat me right!. London: MENCAP; 2007.

    Google Scholar 

  62. Freeman C. Availability and delivery of speech-language pathology services for adults with intellectual disabilities in South-Eastern Ontario. J Intellect Dev Disabil. 2003;10(2):81–91.

    Google Scholar 

  63. Guthrie S, Lecko C, Roddam H. Care staff perceptions of choking incidents: what details are reported? J Appl Res Intellect Disabil. 2015;28(2):121–32.

    Article  PubMed  Google Scholar 

  64. Sheehan R, Gandesha A, Hassiotis A, Gallagher P, Burnell M, Jones G, Kerr M, Hall I, Chaplin R, Crawford MJ. An audit of the quality of inpatient care for adults with learning disability in the UK. BMJ Open. 2016;6:e010480.

    Article  PubMed  PubMed Central  Google Scholar 

  65. Leslie P, Crawford H, Wilkinson H. People with a learning disability and dysphagia: a cinderella population? Dysphagia. 2009;24(1):103–4.

    Article  PubMed  Google Scholar 

  66. Robbins J, et al. Comparison of 2 interventions for liquid aspiration on pneumonia incidence: a randomized trial. Ann Intern Med. 2008;148(7):509–18.

    Article  PubMed  PubMed Central  Google Scholar 

  67. Coppus AM. People with intellectual disability: what do we know about adulthood and life expectancy? Devel Disabil Res Rev. 2013;18(1):6–16.

    Article  CAS  Google Scholar 

Download references

Acknowledgements

The authors would like to thank Isolde Harpur for her contribution to the research, while planning and developing the databases search.

Author information

Authors and Affiliations

Authors

Corresponding author

Correspondence to Beatrice Manduchi.

Ethics declarations

Conflict of interest

The authors declare that they have no conflicts of interest.

Ethical Approval

This article does not contain any studies with human participants or animals performed by any of the authors.

Additional information

Publisher's Note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Appendix 1:- Example of Database-Specific Search Strategy (PubMed)

Appendix 1:- Example of Database-Specific Search Strategy (PubMed)

(Advanced [AB abstract] and [TI Title] search including controlled vocabulary/ suggested “MeSH” terms)

(“Deglutition”[Mesh] OR “Deglutition Disorders”[Mesh] OR “Mastication”[Mesh] OR “Enteral Nutrition”[Mesh) OR “Pneumonia, Aspiration”[Mesh] OR “Asphyxia”[Mesh] OR “Airway Obstruction”[Mesh] OR Dysphagi*[Title/Abstract] OR deglutition*[Title/Abstract] OR swallow*[Title/Abstract] OR chew*[Title/Abstract] OR “food ingest*”[Title/Abstract] OR “feeding disorder*”[Title/Abstract] OR “eating disorder*”[Title/Abstract] OR “drinking disorder*”[Title/Abstract] OR “diet modif*”[Title/Abstract] OR meal*[Title/Abstract] OR “enteral feeding*”[Title/Abstract] OR “enteral nutrition*”[Title/Abstract] OR “enterally fed”[Title/Abstract] OR aspirat*[Title/Abstract] OR pneumonia*[Title/Abstract] OR “respiratory infection*”[Title/Abstract] OR asphyxia*[Title/Abstract] OR suffocat*[Title/Abstract] OR chok*[Title/Abstract] OR “airway obstruct*”[Title/Abstract] OR “nutritional status”[Title/Abstract] OR “weight change*”[Title/Abstract] OR “weight gain*”[Title/Abstract] OR “weight loss*”[Title/Abstract] OR malnutrition[Title/Abstract] OR undernutrition[Title/Abstract] OR malnourish*[Title/Abstract] OR “nutritional deficienc*”[Title/Abstract] OR dehydraT*[Title/Abstract] OR hydrat*[Title/Abstract]) AND (“Intellectual Disability”[Mesh] OR “Intellectual disabilit*”[Title/Abstract] OR “intellectual disorder*”[Title/Abstract] OR “intellectual impairment*”[Title/Abstract] OR “development* disorder*”[Title/Abstract] OR “development* disability*”[Title/Abstract] OR idiocy[Title/Abstract] OR “mental* retard*”[Title/Abstract] OR “mental* deficienc*”[Title/Abstract] OR “mental disability*”[Title/Abstract] OR “mental* disorder*”[Title/Abstract] OR “mentally disabled”[Title/Abstract] OR “learning disabilit*”[Title/Abstract] OR “learning disorder*”[Title/Abstract] OR “Down* syndrome*”[Title/Abstract] OR “Trisomy 21”[Title/Abstract] OR “Cri-du-Chat syndrome*”[Title/Abstract] OR “De Lange Syndrome*”[Title/Abstract] OR “Kleefstra Syndrome”[Title/Abstract] OR “De Barsy Syndrome”[Title/Abstract] OR “Coffin-Siris Syndrome”[Title/Abstract] OR “Mental retardation X-Linked”[Title/Abstract] OR “Fragile X Syndrome”[Title/Abstract] OR “Martin-Bell syndrome”[Title/Abstract] OR “Rett* Syndrome*”[Title/Abstract] OR “Prader-Willi Syndrome”[Title/Abstract] OR “Prader-Labhart-WillI Syndrome”[Title/Abstract] OR “Rubinstein-Taybi Syndrome”[Title/Abstract] OR “WAGR Syndrome”[Title/Abstract] OR “PWS”[Title/Abstract] OR “Williams Syndrome”[Title/Abstract])

Reference

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Manduchi, B., Fainman, G.M. & Walshe, M. Interventions for Feeding and Swallowing Disorders in Adults with Intellectual Disability: A Systematic Review of the Evidence. Dysphagia 35, 207–219 (2020). https://doi.org/10.1007/s00455-019-10038-5

Download citation

  • Received:

  • Revised:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s00455-019-10038-5

Keywords

Navigation