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Knowledge and Practice Products
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Knowledge Products
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Interdisciplinary pain care for people with intellectual disabilities
Why is specialized pain care needed? What are recent guidelines on the topic? How can pain care be implemented? What are the next steps?
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The Down Side of Pain: Pain Assessment and Experience in Adults with Down Syndrome and the Relationship with Cognition
Research on pain perception and pain assessment/diagnostics in people with Down syndrome and its relationship with cognition.
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With the Body in Mind (PDF)
About self-injury (and pain) in Cornelia de Lange syndrome. (The PDF file may take a moment to load.)
- The model of Loeser adapted with challenges in pain care for people with intellectual disabilities. (source: Dutch guideline on pain in ID; SKILZ, 2025) - PDF - 0.3MB
Practice Products
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How do you deal with pain in people with intellectual disabilities? New guideline available! (November 2025)
Recognizing pain is not straightforward, especially not in people with intellectual disabilities. They experience pain more often but express it differently. Their behavior can be atypical, and pain is difficult to distinguish from stress, anxiety, or other emotions. As a result, pain often goes unnoticed—risking underrecognition and undertreatment.
The new SKILZ guideline "Pain in People with Intellectual Disabilities" provides structure and depth on the following themes:
- Methodical approach: how do you collaborate?
- Recognizing pain: what signs should you look for?
- (Sub)acute and chronic pain: how do you diagnose, treat, and evaluate?
- Organization of care: what are the conditions and recommendations for care organizations?
This guideline is developed for care professionals working with adults with intellectual disabilities—from caregivers and nurses to behavioral experts, paramedics, and ID physicians. Other professionals who (occasionally) work with this target group will also find valuable tools here.
View the full guideline and associated tools, click the link below:
Pain in People with Intellectual Disabilities | Long-Term Care GuidelinesThe online text is available in main languages as an estimated translation via the web browser's built-in translation function (see https://www.richtlijnenlangdurigezorg.nl/richtlijnen/pijn-bij-mensen-met-een-verstandelijke-beperking). Because the online attachments are only in Dutch, the most important information has been translated in English figures and tables for a submitted paper in July 2026.
Requests or questions about the attachments in English can be asked via info@pijnzorgonbeperkt.nl
- These table documents contain a clear overview with the steps of diagnosis and treatment of (sub)acute and chronic pain alongside with suggestions for involved treatment disciplines (source: Dutch guideline on pain in ID; SKILZ, 2025 and ERN-Ithaka guideline on pain in PIMD; Ithaka, 2026):
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Personalized pain care is a way to image a person's unique way of expressing pain alongside with a description of tailor-made individual interventions for pain. Instruments for personalized pain care include:
- Pediatric Pain Profile: ppprofile (for children)
- RAPPID: rappid_complete.pdf (for adults)
- A tool for biopsychosocial and interdisciplinary imaging for chronic pain (source: Dutch guideline on pain in ID; SKILZ, 2025) - PDF - 0.3MB
- Overview of non-pharmacological interventions for pain in ID (source: Dutch guideline on pain in ID; SKILZ, 2025) - PDF - 0.5MB
- Implementation of pain care in a care center involves the use of various steps to increase the chance of success: Knowledge-to-Action Framework | RNAO.ca is an evidence-based model with which we have experience during a national collaboration project implementing the Dutch guideline on pain care in ID since 2025. Contact us if you have questions.