Polyhandicap, profound intellectual multiple disabilities : Concept and definition of a highly specific public health issue

Objectives: The concept of polyhandicap first emerged in the late ’60s in France, with actually a consensus on its definition. This consensus has yet to be reached internationally. The absence of an international consensus on a definition and name for persons with polyhandicap limits progress in research and health planning for these people.

Methods: This article describes the history of the emergence of the concept of polyhandicap in France and internationally.

Results: The emergence of the concept and definition of polyhandicap is part of the history of the development of special education and care for children with disabilities started at the end of the 19th century and during the first half of the 20th century. In France, between 1970 and 2002, working groups composed of professionals and family associations gradually developed and refined the definition of polyhandicap, differentiating it from other clinical entities such as cerebral palsy. Internationally, the term polyhandicap is used in 4 European countries: in France where it first appeared, in Italy, in French-speaking Belgium, and in French-speaking Switzerland but also outside the EU. Various terms may be used around the world to describe clinical entities similar to polyhandicap; the most frequently used in the literature is the term Profound Intellectual and Multiple Disabilities (PIMD) or PIMD Spectrum which does not systematically refer to an early brain injury.

Discussion: We are currently in the process of internationalizing the concept and definition of polyhandicap, and hopefully, 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.

Conclusion: A consensus around a precise definition of polyhandicap is important to ensure that these people are recognized for their uniqueness and specific qualities and to provide them adapted care.