Evaluating quality of life in people with down syndrome: A literature review

There are several suggestions that assessing quality of life (QoL) in people with Down syndrome (DS) could be desirable for clinical, scientific, economic reasons and beyond. The aim of the present work was to make a systematic literature review investigating useful instruments for the assessment of QoL in people with DS and the main results obtained through their application in comparisons with the ones of normal population; moreover, we asked whether it was possible to obtain the outcome measures directly by patients with DS and their reliability in comparison with the caregiver’s ones. Our search led to seven articles, assessing QoL in different ways (most of them using scales not yet validated in people with DS), sometimes with contrasting qualitative and quantitative results. One only study used patient’s direct point of view, showing good reliability. These findings could be the starting point to build a customized method for assessing QoL in people that could become a reliable tool for clinical practice, not only in experimental protocols.