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Polydisability, a profound intellectual disability: concept and definition of a specific public health issue

Rousseau MC, Winance M, Baumstarck K.

Polyhandicap, profound intellectual multiple disabilities: Concept and definition of a highly specific public health issue. Rev Epidemiol Sante Publique. 2023 Dec;71(6):102184. doi: 10.1016/j.respe.2023.102184. Epub 2023 Nov 1. PMID: 37918043.

Mediation/Education :

In the absence of a consensus on the definition of polyhandicap at international level, where the term PIMD (Profound Intellectual and Multiple Disabilities) is more frequently used, this article summarizes the concept of polyhandicap, its emergence and its specific features, and argues for international recognition of a precise definition of polyhandicap, so that polyhandicapped people can be recognized in their uniqueness and benefit from adapted care.

The international definition, drawn up by two working groups from different backgrounds and professions, states that polyhandicap is “a syndromic entity that includes progressive or fixed etiologies, and refers to the definitive consequences of a disorder, anomaly or lesion occurring in a developing or immature brain. Its consequences include both severe and profound mental deficiencies, leading to extreme restriction of communication, and severe motor deficits leading to extreme reduction of autonomy and mobility.”

Ultimately, the concept and definition of polyhandicap is gradually evolving towards an international consensus, and we can hope that, as was the case for cerebral palsy in the 2000s, the various research teams working on this subject around the world will create collaborations and research networks targeting this specific population.