Knowledge and Practice Products

This page provides an overview of knowledge and practice products that support the detection, assessment, and treatment of pain in people with intellectual disabilities.

Clicking on a link will open the corresponding document or page in a new window.

Knowledge Products

Articles, posters, and dissertations on pain perception, diagnostics, and pain signaling in people with intellectual disabilities.

• Article: Pain in People with Intellectual Disabilities (PDF) 3.4 MB

  Describes challenges in care and education regarding pain in people with intellectual disabilities.

• Challenges of Pain in People with Intellectual Disabilities (PDF) 0.1 MB

  Summary of the challenge analysis by Stichting Kwaliteits Impuls Langdurige Zorg (SKILZ), in preparation for the guideline ‘Pain in People with Intellectual Disabilities’.

• From Vulnerabilities to Opportunities: Working Together Toward Tailored Pain Care (PDF) 0.5 MB

  About the development and implementation of practical tools, guidelines, and education to better detect, assess, and treat pain (acute and chronic), with a focus on methodical work, training, and (inter)national collaboration.

• 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.

• Pain and Panic During Blood Draws (PDF) 6.6 MB

  Inventory of the scope, experiences, and solutions regarding pain, anxiety, and resistance during blood draws in adults with intellectual disabilities.

• Oncological Pain in People with Intellectual Disabilities (PDF) 0.1 MB

  About research on pain in cancer patients with intellectual disabilities.

• Report: Expert Meeting on Pain in ID (PDF) 0.1 MB

  Compilation of experiences and advice from clients and representatives during the development of the guideline.

Practice Products

Guidelines, flowcharts, and measurement instruments for detecting, assessing, and treating pain in care practice.

• Guideline: Pain in People with Intellectual Disabilities

  This guideline describes how to methodically and interdisciplinary detect, diagnose, and treat pain in people with intellectual disabilities. The guideline provides practical tools for daily work within your own organization.

  Open the guideline and appendices (new window)

  • Flowcharts for methodical work in cases of (sub)acute pain (PDF) and chronic pain (PDF) .
  • Pain Signaling Plan

    Tool to record how pain is expressed and what can be done about it for individual clients; recommended for chronic/recurring pain and vulnerable groups.

  • Self-report measurement instruments (comprehension tests):
    • Pain intensity numerical scale comprehension test (PDF)
    • Pain intensity pictograms comprehension test (PDF)
    • Pain intensity pyramid scale comprehension test (PDF)
    • Types of pain pictograms comprehension test (PDF)

    Where possible, self-reporting is desirable; use a comprehension test to determine if the client understands and can use the scale.

  • Behavioral observation measurement instruments:
    • REPOS (Rotterdam Elderly Pain Observation Scale, comfort_assessment): REPOS Measurement Instrument (PDF) • REPOS Training

      Note: Training is required to use the REPOS reliably. Erasmus MC offers a free online e-module for this purpose.

    • The Awwie Pain App (VOPS-MB)

      Optimization and validation of the Flemish Observational Pain Scale for Multiple Disabilities (VOPS-MB). Availability of the app and training will follow in 2026.

    • APOS-PIMD – factsheet and research: Do You See My Pain?

      About APOS-PIMD (Academic Workshop EMB). Availability of the instrument and training will follow in 2026.

  • Pain Behavior Checklist (CPG): View the checklist

    Not included in the guideline (focus on adults). Work is being done to make this instrument available.

  • Overview of non-pharmacological treatments: (sub)acute pain

    See table 5.2 (section 5.2.4) on the relevant guideline page.

  • Interdisciplinary consultation format for chronic pain: Interdisciplinary Consultation for Chronic Pain (PDF)

    Maps factors related to pain according to Somatic – Cognitive – Emotional – Behavioral – Social.

  • Typology of chronic pain: View the table with types and diagnostics

    Table 6.1 provides an overview of types of chronic pain and options for diagnostics and treatment.

  • Considerations for care for different subgroups: Considerations for Subgroups (PDF)

    Attention to pain expression, detection, diagnostics, and treatment for different developmental levels, genetic syndromes, and other conditions.

  • Implementation plan: Implementation Plan: Pain in People with Intellectual Disabilities (PDF)

    Contains recommendations for implementing the guideline. PZO has started implementation with care organizations; for more information, you can contact us.

• Information about: Persistent Physical Complaints in People with Intellectual Disabilities . More information about PPC will follow in 2026.