AbstractThe paper reviews the international literature on quality of life (QoL) for persons withneurodevelopmental disorders (NDD) in order to define the theoretical frame for optimalassessment. The application of the QoL approach to assessment procedures shouldbe based on three main aspects: shared QoL, personal QoL and family QoL. The first aspectrefers to characteristics of individual life that are shared with other people. The secondaspect proceeds from the fact that each individual has a changing set of personal attributesthat determine the subjective experience of life. In the third aspect the previoustwo are applied to the family that includes a person with NDD. Disability impacts thewhole family and the determination of appropriate conceptualization of family outcomesrequires an understanding of the impact of members with a disability on family QoL. Atany level, it seems best to take a comprehensive approach to assessing QoL, integratingsubjective and objective aspects, self-reports and hetero-evaluations. The QoL approachis above all a way to explore the rich intricacies of personal quality of life. Such assessmentmay be used effectively with people with NDD, independently from the severityof their functioning impairment. Individuals with profound ID may express their innerstates through consistent behavioural repertoires, which can be discerned by personsclosest to them and validated by more independent others. Attention must be paid in usingnon-generic instruments, such as those that measure health-related QoL. Althoughthey do focus on the individual person, they still support a theoretical perspective ofQoL that has not departed significantly from the traditional medical approach. Currentlyavailable generic tools, although they have some common conceptual and evaluationcharacteristics, still show considerable differences in the areas to be included in “sharedQoL”, the dimensions used to evaluate “Individual QoL”, and the role attributed toindicators of QoL. QoL assessment should not represent a classification of individuals,services or systems, but it should help provide, within service systems and organizations,a value system that is consistent with those values held by people with NDD
