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Online International survey about needs and beliefs of healthcare and family caregivers regarding pain assessment and management in DOC patients

Study presentation

The following survey, developed by the DoC Special Interest Group (DoC-SIG) of the International Brain Injury Association (IBIA), is intended for clinical teams and family members of patients with disorders of consciousness (DoC) following severe brain injury.

Its purpose is to better understand the needs and beliefs of caregivers regarding the assessment of pain in this challenging population. The ultimate goal is to improve the assessment and clinical management of pain in this population of patients who are unable to communicate.

This survey is available in 5 languages (English, French, Russian, Italian, Spanish). To change the language, simply click on the option at the bottom right of the page.

!! Important !! You can exit and return to the survey at any time by clicking on "Save and continue" at the bottom right of the page.

Please answer the questions below by selecting the answers you agree the most with.

It is very important to answer each question so that your participation can be taken into account in this survey.

In advance, we thank you for your collaboration!


You will need about 10-15 minutes to complete the survey.


By completing this survey, you consent to the use of the data provided for clinical research purposes only.

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More information:

Estelle Bonin - (University of Liege, Belgium)

Consciousness: Can be described on the basis of two components: arousal (i.e., wakefulness, or vigilance) and awareness of the environment and of the self. Following a severe brain injury that resulted in a period of coma (between 2 and 4 weeks), the patient may evolve in different altered state of consciousness.

Unresponsive wakefulness syndrome/vegetative state (UWS/VS): The patient shows preserved eye-opening (spontaneously or after a sensory stimulation) and preserved reflexive activity but no sign of consciousness-related.

Minimally conscious state (MCS): Patients in MCS minus will show preservation of low-level non-reflexive behaviours (visual tracking, object manipulation) while MCS plus will show some preserved language functioning (intelligible verbalization, response to command). These behaviours may fluctuate over time but are reproducible.

Pain: Unpleasant sensory and emotional experience, associated with real or potential tissue damage, or described in terms of such damage. The inability to communicate verbally does not negate the possibility that a person may experience pain and need appropriate treatment to relieve it.