Pain and Distress

Assess for pain and its intensity

With caregiver input and adapted tools, such as the Chronic Pain Scale for Nonverbal Adults with Intellectual Disabilities74, 75 or the Non-Communicating Adult Pain Checklist76, 77, assess for pain and its intensity.

Strongly Recommended

Empirical Expert

Pain and distress can manifest atypically in patients with limited communication and can be difficult to recognize. Nonspecific changes in vital signs, appearance, and behaviour, including being less responsive and more withdrawn or new onset of behaviours that challenge  (see guideline Behaviours that Challenge), might be the only indicators of pain and distress.72, 73

Consider behaviours that challenge

Employ a comprehensive and systematic approach to assessing behaviours that challenge that might be communicating pain or other causes of distress (see guideline Behaviours that Challenge).14, 72, 81, 82

  Strongly Recommended

Empirical Expert

Common sources of pain include injury, dental caries, gastroesophageal reflux disease (GERD), arthritis, constipation, and dysuria.78-80 Distress can be a response to pain, challenges in the person’s environment (eg, sensory hypersensitivity), lack of supports or some negative life experience.72, 73

Chronic pain scale for nonverbal adults with intellectual disabilities (CPS-NAID)

Download the Chronic pain scale for nonverbal adults with intellectual disabilities (CPS-NAID) from the Centre for Pediatric Pain Research. This pain scale was adapted from the Non-communicating Children’s Pain Checklist-Revised to assess chronic pain in people over 18 years who have intellectual and developmental disabilities and are unable to communicate verbally.

Non-communicating adult pain checklist

Download the Non-communicating adult pain checklist from the Pain BC website to help assess chronic pain in non-communicating adults such as those with intellectual and developmental disabilities.

DisDAT v20: Disability distress assessment tool

The DisDAT v20: Disability distress assessment tool was developed by a combined learning disability and palliative care team in the north east of England, UK for identifying distress in people with moderate to severe communication difficulties. The tool is free to download and copy, the only restriction being that it cannot be modified in any way, including by adding organizational logos.

Learn how to implement these guideline recommendations into your practice from selected articles in the special issue on primary care of adults with intellectual and developmental disabilities in Canadian Family Physician, Vol 64 (suppl 2): S1-78, April 2018:

HELP for behaviours that challenge in adults with intellectual and developmental disabilities

14. Grier L. Chapter 26: Medical home. In: Rubin IL, Merrick J, Greydanus DE, Patel DR, editors. Health care for people with intellectual and developmental disabilities across the lifespan. Rubin and Crocker 3rd ed. Springer; 2016. p. 289-300.

72. National Institute for Health and Care Excellence – NICE. Challenging behaviour and learning disabilities: Prevention and interventions for people with learning disabilities whose behaviour challenges. NICE guidelines [NG 11]. London, UK: NICE National Institute for Health and Care Excellence; 2015.

73. Banks R, Bush A, Other Contributors. Challenging behaviour: A unified approach – update: Clinical and service guidelines for supporting children, young people and adults with intellectual disabilities who are at risk of receiving abusive or restrictive practices. London, UK: The Royal College of Psychiatrists; 2016 April.

74. Breau,L. M., C. Burkitt, S. Salsman, T. Sarsfield-Turner and R. Mullan. Chronic pain scale for nonverbal adults with intellectual disabilities (CPS-NAID) [Web resource]. 2009. Accessed 2017 Oct 11.

75. Burkitt C, Breau LM, Salsman S, Sarsfield-Turner T, Mullan R. Pilot study of the feasibility of the non-communicating children’s pain checklist revised for pain assessment for adults with intellectual disabilities. Journal of Pain Management. 2009;2(1):37-49.

76. Lotan,M., R. Moe-Nilssen, A. E. Ljunggren and L. I. Strand. Non-communicating adult pain checklist [Web resource]. 2009. Accessed 2017 Nov 6.

77. Lotan M, Moe-Nilssen R, Ljunggren AE, Strand LI. Measurement properties of the non-communicating adult pain checklist (NCAPC): A pain scale for adults with intellectual and developmental disabilities, scored in a clinical setting. Res Dev Disabil. 2010;31(2):367-75.

78. Jansen DE, Krol B, Groothoff JW, Post D. People with intellectual disability and their health problems: A review of comparative studies. J Intellect Disabil Res. 2004;48(Pt 2):93-102.

79. de Knegt NC, Pieper MJ, Lobbezoo F, Schuengel C, Evenhuis HM, Passchier J, et al. Behavioral pain indicators in people with intellectual disabilities: A systematic review. J Pain. 2013;14(9):885-96.

80. Kwok H, Cheung PW. Co-morbidity of psychiatric disorder and medical illness in people with intellectual disabilities. Curr Opin Psychiatry. 2007;20(5):443-9.

81. Regnard,C., D. Matthews, L. Gibson and Learning Disability and Palliative Care Team at Northgate Hospital in Northumberland, UK. DisDAT v20: Disability distress assessment tool [Web resource].  United Kingdom: Northumberland Tyne & Wear Trust; St. Oswald’s Hospice. 2008. Accessed 2016 Dec 13.

82. Doody O, Bailey ME. Pain and pain assessment in people with intellectual disability: Issues and challenges in practice. British Journal of Learning Disabilities. 2017;45(3):157-65.

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