Knowledge and Practice Products

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Knowledge Products

• Interdisciplinary pain care for people with intellectual disabilities Pain Care (Un)limited

  Why is specialized pain care needed? What are recent guidelines on the topic? How can pain care be implemented? What are the next steps?

• The Down Side of Pain: Pain Assessment and Experience in Adults with Down Syndrome and the Relationship with Cognition Vrije Universiteit Amsterdam – dissertation (Nanda de Knegt)

  Research on pain perception and pain assessment/diagnostics in people with Down syndrome and its relationship with cognition.

• With the Body in Mind (PDF) University of Amsterdam – dissertation (Sylvia Huisman)

  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

• 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):
  • Diagnosis and treatment of (sub)acute pain in ID - PDF - 0.5MB
  • Diagnosis and treatment of chronic pain in people with intellectual disabilities - PDF - 0.3MB
• 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.