Quality of life outcomes and predictors for youth with intellectual disability and rare diseases

The concept of quality of Life (QoL) has become particularly relevant in the field of intellectual disability (ID). However, the existing scientific literature on QoL of people with ID and rare diseases (RDs) is very limited. Therefore, this study aimed to analyze individual QoL of children and youth with RDs and to evaluate the impact of personal and contextual factors on their QoL. The sample was composed of 114 Spanish participants with ID and RDs, aged between 4 and 21 years. The KidsLife Scale was applied. This instrument includes 96 items, third-person formulated, organized across eight QOL domains: physical wellbeing, material wellbeing, emotional wellbeing, interpersonal relationships, social inclusion, rights and personal development. Descriptive statistics were calculated and correlation coefficients and multiple linear regression were computed. The most elevated scores were achieved in physical well-being and material wellbeing, whereas the lowest scores were shown in social inclusion and self-determination domains. Sex, level of support needs, percentage of disability and size of the organization were predictive factors of QoL scores. These outcomes shed light into priority areas and predictors that should be considered in the development of individualized supports, organizational approaches and policy initiatives intended to promote the QoL of children and youth with RDs and ID.