Reframing QoL assessment in persons with neurodevelopmental disorders

Abstract

Abstract
The paper reviews the international literature on quality of life (QoL) for persons with
neurodevelopmental disorders (NDD) in order to define the theoretical frame for optimal
assessment. The application of the QoL approach to assessment procedures should
be based on three main aspects: shared QoL, personal QoL and family QoL. The first aspect
refers to characteristics of individual life that are shared with other people. The second
aspect proceeds from the fact that each individual has a changing set of personal attributes
that determine the subjective experience of life. In the third aspect the previous
two are applied to the family that includes a person with NDD. Disability impacts the
whole family and the determination of appropriate conceptualization of family outcomes
requires an understanding of the impact of members with a disability on family QoL. At
any level, it seems best to take a comprehensive approach to assessing QoL, integrating
subjective and objective aspects, self-reports and hetero-evaluations. The QoL approach
is above all a way to explore the rich intricacies of personal quality of life. Such assessment
may be used effectively with people with NDD, independently from the severity
of their functioning impairment. Individuals with profound ID may express their inner
states through consistent behavioural repertoires, which can be discerned by persons
closest to them and validated by more independent others. Attention must be paid in using
non-generic instruments, such as those that measure health-related QoL. Although
they do focus on the individual person, they still support a theoretical perspective of
QoL that has not departed significantly from the traditional medical approach. Currently
available generic tools, although they have some common conceptual and evaluation
characteristics, still show considerable differences in the areas to be included in “shared
QoL”, the dimensions used to evaluate “Individual QoL”, and the role attributed to
indicators 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.