Exploración del constructo calidad de vida relacionado con la salud en niños, niñas y adolescentes con síndrome de Down

The construct of health-related quality of life (HRQOL) in children and adolescents with Down syndrome has not been defined, nor are there any instruments to assess it. Thus, the aim of the present study is to explore this construct in children and adolescents with Down syndrome, and in their parents and caregivers, in order to establish the conceptual basis for an assessment instrument. A review of information and evidence related to quality of life was carried out in web pages of organizations around the world and in scientific databases, with which an approximation to the HRQOL construct was achieved. Seven interviews and two focus groups were conducted with children and adolescents with Down syndrome and four interviews and three focus groups with parents and caregivers. Based on the methodology developed, the categories of physical, functional, psychological and social capacity emerged.