Instruments for the assessment of quality of life in children and adolescents with Down syndrome: A Scoping review

Abstract

AbstractThe construct of quality of life (QOL) includes aspects of health and well-being of people. Down syndrome (DS) or trisomy 21 is one of the most common congenital anomalies. DS is characterized by motor and cognitive alterations that affect health and QOL of both the child and caregiver. In pediatrics, there are various instruments to assess Health-Related Quality of Life (HRQOL) and QOL. The advantage of these instruments is that they can be implemented in any type of disease and population in general. However, they may have certain disadvantages, such as the difficulty in evaluating specific aspects of each disease or condition related with Down syndrome. The aim of this study was to identify 1: instruments used to assess quality of life in children with Down syndrome. 2: psychometrics properties of instruments validated in children with Down syndrome to assess quality of life.Methods:A Scoping review was conducted to identify instruments used in children and adolescents with Down syndrome and their psychometric properties. The electronic databases PubMed, Embase, Epistemonikos and other sources were explored with a search strategy that included keywords such as “Down syndrome,” “Quality of life” or “Life Quality,” “Health-Related Quality of Life” and psychometrics properties. The quality of the included studies was evaluated using the COSMIN (Consensus Based Standards for the Selection of Health Measurement Instruments) methodology.Results:Thirteen studies were selected because they used some instrument to assess the quality of life in children or adolescents with Down syndrome. In these studies, eight instruments were used, of which only four have the report of some psychometric property in this population. Two of the eight evaluated quality of life and six health-related quality of life.Conclusions:There is little information on the psychometric properties of instruments to assess quality of life and, above all, to assess health-related quality of life.It is necessary to create an instrument focused on children with DS to assess the health-related quality of life, which considers the particularities of their condition. Thus, it will be possible to determine how interventions from different areas can influence this functional condition