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

A.  Enninga; Aly Waninge; W.J. Post; A. A. J. van der Putten

doi:10.1111/jar.13089

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

Participation and Health of Persons with Intellectual and Visual Disabilities

University of Groningen, Department of Inclusive and Special Needs Education

Research output: Contribution to journal › Article › Academic › peer-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 language	English
Pages (from-to)	1-11
Number of pages	11
Journal	Journal of Applied Research in Intellectual Disabilities
Volume	36
Issue number	3
DOIs	https://doi.org/10.1111/jar.13089
Publication status	Published - 13 Mar 2023

Keywords

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

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10.1111/jar.13089Licence: CC BY-NC-ND

Cite this

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

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.",

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Reliable assessment of pain behaviour in adults with profound intellectual and multiple disabilities: The development of an instruction protocol. / Enninga, A. (First author); Waninge, Aly; Post, W.J. et al.
In: Journal of Applied Research in Intellectual Disabilities, Vol. 36, No. 3, 13.03.2023, p. 1-11.

Research output: Contribution to journal › Article › Academic › peer-review

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T1 - Reliable assessment of pain behaviour in adults with profound intellectual and multiple disabilities

T2 - The development of an instruction protocol

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AU - van der Putten, A. A. J.

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N2 - 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.

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

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Keywords

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