Quality of life for the young adult with neurodisability. Foreword.

摘要

Improving quality of life (QoL) is a major goal of medical, behavioural, and social interventions by society to address the limitations borne by persons with disabilities. But what is QoL? Who determines its present status? Who determines that there has been a change? How do they do so? Is the change measurable, and is it important? Are there measurable indices that reflect changes in QoL?Difficult as the answers to these questions may be when addressing QoL in adults, the problems are often greater when addressing them in children with disabilities. Is our focus on the child, their parents, clinicians, teachers, or all of these together?These questions have become even more relevant in recent times widi the acceptance by society that it has a responsibility to improve the QoL of persons with disabilities. A number of indices of QoL have been developed and are used regularly to make decisions about the efficacy of interventions and their cost-effectiveness. However, many conclusions are based upon observational data and their reliability can be questioned. Other conclusions are supported by reproducible studies, but are limited in their applicability as meaningful indices of QoL and changes in it.