Quality of life outcomes and predictors for youth with intellectual disability and rare diseases.
Social inclusion and self-determination are the weakest QoL areas for kids with ID plus rare diseases — target these in support plans.
01Research in Context
What this study did
Morán et al. (2025) asked kids with intellectual disability and a rare disease to fill out the KidsLife Scale.
The team wanted to know which parts of life felt best and worst, and what predicted higher scores.
They used one-time surveys, no control group, just a snapshot of real-world quality of life.
What they found
Physical and material well-being scored highest.
Social inclusion and self-determination scored lowest.
Four child and service factors predicted the totals, so these areas can be flagged early.
How this fits with other research
Wilson et al. (2023) also worked on self-report tools for teens with ID and found strong reliability for the SWEMWBS and Kidscreen-10. Their message: kids can rate their own mental health if you pick the right form.
Badia et al. (2013) showed that more enjoyable, informal leisure raises QoL in youth with cerebral palsy. Lucía’s low social-inclusion scores echo that finding — less participation links to lower well-being.
Davis et al. (2013) built the CP QOL-Teen for a different diagnosis but used the same validation steps. Together these papers give you a menu of proven QoL scales matched to diagnosis and age.
Why it matters
When you write a support plan, list self-determination goals first — choice of activity, where to sit, what to eat. Add peer leisure right after. These two domains lag the most, and both can be moved without costly gear. Use the KidsLife, SWEMWBS, or CP QOL-Teen at intake, then every six months to show progress in language the funding source already trusts.
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02At a glance
03Original abstract
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.
Research in developmental disabilities, 2025 · doi:10.1016/j.ridd.2025.105071