Finding a definition of aphasia that all aphasia researchers around the world agree on

To reach consensus (everyone agreeing) on a definition of aphasia, for aphasia researchers around the world.

A modified e-Delphi exercise. This is a special online survey which asks questions to reach a consensus (everyone agreeing). There are multiple rounds of the survey, to allow changes based on the results. 

The proposed (suggested) definition was:

Aphasia is a communication disability due to an acquired impairment of language modalities caused by focal brain damage. Aphasia may affect participation and quality of life of the person with aphasia as well as their family and friends. Aphasia masks competence and affects functioning across relationships, life roles and activities, thereby influencing social inclusion, social connectedness, access to information and services, equal rights, and wellbeing in family, community and culture.

Consensus was not reached on two parts of the definition:

• Should aphasia be described as a communication disability OR a language impairment?

• Is aphasia caused by focal brain damage (for example, stroke or tumour) OR both focal and/or diffuse brain damage (for example, dementia, traumatic brain injury)?

There is no universal (world wide) agreement about a definition of aphasia in research or clinical practice. An agreed definition of aphasia is needed to improve research. It would help researchers compare results across different research studies. It would help people with aphasia to be diagnosed and receive treatment more easily. It would also make it easier to raise awareness about aphasia.

This research might not benefit you directly. But an agreed definition of aphasia is important to help people with aphasia to be diagnosed and receive treatment more easily. It will help researchers compare results across different research studies. It will also make it easier to raise awareness about aphasia. 

A special type of online survey called an “e-Delphi” survey was done. This type of survey helps reach consensus (everybody agreeing) on important topics.

No treatment was included in this research.

Definitions of health conditions are important. Definitions clearly explain what we know about a topic. Currently there is no world wide agreement about a definition of aphasia in research or clinical practice. An agreed definition of aphasia well help us to improve aphasia research. It would help researchers compare results across different research studies. It would help people with aphasia to be diagnosed and receive treatment more easily. It would also make it easier to raise awareness about aphasia.

There were no risks identified.

Aphasia researchers who are part of a group called the Collaboration of Aphasia Triallists (CAT). This includes researchers from 31 countries (most members are from European countries). This includes researchers from: speech and language therapy, medicine, public health, social science, linguistics, neuropsychology, psychology, statistics, and nursing.

Over one hundred (100) aphasia researchers around the world. All researchers are part of a group called the Collaboration of Aphasia Triallists (CAT).  

An e-Delphi survey is used lots in healthcare research to reach consensus (everybody agreeing). It is a convenient way to survey lots of people to reach a consensus. It doesn’t cost a lot of money.

2016-2018

The research included aphasia researchers from around the world (31 countries, mostly European).

This research is based upon work from Collaboration of Aphasia Trialists supported by COST (European Cooperation in Science and Technology) and the Tavistock Trust for Aphasia (TTA). Sarah Wallace is supported by a National Health and Medical Research Council (NHMRC) Emerging Leadership Investigator Grant.

The views expressed in the research are those of the authors and not necessarily those of the funders.

The research did not include people with aphasia, family members and health professionals who are not researchers. They should be included in future research too.     

The survey was completed by Collaboration of Aphasia Triallists (CAT) members only. This includes researchers from 31 countries, but most members are from European countries. Countries like United States, Canada, Australia, Japan and China do not have a lot of members. Future research should include more aphasia researchers from all regions of the world.

Yes.

More international discussion with a range of health professionals is needed before trying to reach a consensus (everybody agreeing) again.

For more information, contact Associate Professor Karianne Berg.

Email: karianne.berg@nord.no