Developing and validating the Communication Function Classification System for individuals with cerebral palsy

Individuals with cerebral palsy (CP) have sensorimotor and developmental issues that affect their daily lives by restricting their mobility, manipulation of objects, and/or communication.1 Within the framework of the World Health Organization’s International Classification of Functioning, Disability and Health (ICF),2,3 the Gross Motor Function Classification System (GMFCS)4 and the Manual Ability Classification System (MACS) for children with CP5 make it possible to classify mobility and handling objects respectively, at the ICF activity/participation level.6 However, no analogous classification of functional communication has been available for use in CP practice and research. The lack of a communication classification tool that is quick, reliable, valid, and easy to use limits the comparison of descriptive CP epidemiology studies as well as the interpretation and generalizability of CP treatment studies. Communication disorders can be described from several perspectives: body structure and function level, activity level, and participation level, as well as environmental and personal levels.2,3,7–13 Estimates of communication disorders in CP have varied from 31%14 to 88%.15 This wide range is partly a result of the lack of a consensus definition of communication disorders within CP research and practice. A recent study from a Norwegian CP registry reported that 51% of children with CP had speech problems as classified by ratings of ‘slightly indistinct’, ‘obviously indistinct’, ‘severely indistinct’, or ‘no speech’, including 19% who had ‘no speech’.16 This population-based estimate reporting indistinct or no speech may underestimate CP communication disorders as it may not capture other types of communication problems resulting from hearing or language impairments. However, reporting speech, language, and hearing difficulties simply suggests the range of associated impairments in CP, not the more pertinent daily-life issues of how well a child with CP communicates with family, friends, acquaintances, and strangers.13 The purpose of this study was to create and validate a communication function classification system (CFCS) for children with CP, for use by a wide variety of individuals interested in CP. This required a shift from the traditional focus on body structure and function (i.e. assessing components of speech, language, and hearing problems), to a focus on activity/participation, specifically the way in which to classify a person’s communication capacity within real-life situations.