Pain in aphasia

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Brief description

The aim of this research project is to investigate how to measure pain in persons with aphasia in a valid and reliable manner when patients are unable to self-report.


Drs. Carolien (N.J.) de Vries, speech and language therapist, PhD candidate, LUMC
Dr. Hanneke Smaling, senior researcher, LUMC
Dr. Ir. Jenny van der Steen, senior researcher, LUMC
Prof. dr. Wilco Achterberg, professor of Institutional Care and Elderly Care Medicine, LUMC


Carolien (N.J.) de Vries

Participating organizations


Start study

March 2018             

Expected completion

Summer 2023 


The use of self-report pain scales in persons with aphasia is challenging due to the communication and cognitive problems. As self-report pain scales are difficult to complete, a pain observation instrument may be a suitable alternative. This project consists of three steps:

The first step was to conduct a systematic review to examine prevalence and incidence of pain in persons with aphasia after stroke, identify pain assessment instruments in use, and examine whether they are feasible, valid, and reliable.

Step 2 involved an observational cross-sectional study (2019-2021) aimed at enrolling at least 80 persons with aphasia, with 50 participants able to also self-report their pain. The participating organizations were geriatric rehabilitation centres and nursing homes, and we investigated the validity and reliability of the pain observation instrument Pain Assessment in Impaired Cognition (PAIC15).

Based on the results of steps 1 and 2, a clinical pain protocol for persons with aphasia will be developed using a Delphi method (2021-2022). For instance, this pain protocol consists of steps containing self-report pain scales in order of usefulness and if self-report pain scales fail, a valid pain observation is used.

In step 3, we will conduct a feasibility study in which we implement the pain protocol for persons with aphasia in the nursing home setting and evaluate its implementation (planned 2022).             

In collaboration with





Vries, N.J. de, Sloot, P.H., Achterberg, W.P. (2017). Pain and pain assessment in stroke patients with a aphasia: a systematic review.Aphasiology, 31:6, 703-719, DOI: 10.1080/02687038.2016.1254150.

Vries, N. de, Smaling, H., Steen, J. Van der, Achterberg, W. Poster abstract: Pain in Aphasia: The Reliability and Validity of the PACSLAC-D Observational Scale. Research/ JAMBA 20 (2019) B27eB34.

Mandysova, P., Klugar, M., Vries, N.J. de, Matĕjková, I. (2020) Assessment instruments used for the self-report of pain by hospitalized stroke patients with communication problems: a scoping review protocol.JBI Evid Synth, 18(0):1-7. DOI: 10.11124/JBISRIR-D-19-00278.