Reliable assessment of pain behaviour in adults with profound intellectual and multiple disabilities: The development of an instruction protocol

A. Enninga (First author), Aly Waninge, W.J. Post, A. A. J. van der Putten

Research output: Contribution to journalArticleAcademicpeer-review

Abstract

Background: Persons with profound intellectual and multiple disabilities (PIMD) are vulnerable when it comes to experiencing pain. Reliable assessment of pain-related behaviour in these persons is difficult.
Aim To determine how pain items can be reliably scored in adults with PIMD.
Methods: We developed an instruction protocol for the assessment of pain-related behaviour in four phases. We used videos of 57 adults with PIMD during potentially painful situations. The items were assessed for inter-rater reliability (Cohen's kappa or percentage of agreement).
Results: The developed instruction protocol appeared to be adequate. Twelve items had satisfactory inter-rater reliability (n = 9: .30–1.00; n = 3: 85%–100%).
Discussion: Calibrating and adjustments to the instructions and item set appeared to be crucial to reliably score 12 items in adults with PIMD. Further research should focus on creating an assessment instrument based on these reliably scored items.
Original languageEnglish
Pages (from-to)1-11
JournalJournal of Applied Research in Intellectual Disabilities
Volume36
Issue number3
DOIs
Publication statusPublished - 13 Mar 2023

Keywords

  • adults with PIMD
  • instruction protocol
  • pain assessment
  • reliability
  • profound intellectual and multiple disabilities

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