Quality of life beyond diagnosis in intellectual disability - Latent profiling.
Kids with ID fall into three quality-of-life profiles—use the pattern to pick the right goals.
01Research in Context
What this study did
Leonard et al. (2022) looked at quality-of-life data from kids with different intellectual disability diagnoses.
They used latent profile analysis to see if the kids sorted into clear groups.
The sample included children with Down syndrome, autism, CDKL5, Rett, and other causes of ID.
What they found
The numbers formed three classes.
Down syndrome and autism mostly landed in the highest-QOL class.
CDKL5 and Rett mostly landed in the lowest-QOL class.
How this fits with other research
Ferguson et al. (2020) ran a similar model on kids coming to an autism clinic and found five profiles instead of three.
The difference is narrow versus wide diagnosis: F et al. looked only at ASD referrals, while Helen et al. cast a wider ID net.
Garrison et al. (2025) kept the same math but swapped the outcome, finding five stable psychosocial risk profiles in youth with ID.
Together the papers show the method keeps working even when you change the question.
Why it matters
You can stop treating every child with ID as one big group.
Look at which QOL class the child lands in, then pick targets that match that profile.
High-class kids may need independence goals, mid-class kids may need social-leisure skills, and low-class kids may need emotional and medical supports first.
Want CEUs on This Topic?
The ABA Clubhouse has 60+ free CEUs — live every Wednesday. Ethics, supervision & clinical topics.
Join Free →Score your client’s QOL domains, see which class they fit, and let that guide your next goal choice.
02At a glance
03Original abstract
OBJECTIVE: To compare quality of life (QOL) across diagnoses associated with intellectual disability, construct QOL profiles and evaluate membership by diagnostic group, function and comorbidities. METHOD: Primary caregivers of 526 children with intellectual disability (age 5-18 years) and a diagnosis of cerebral palsy, autism spectrum disorder, Down syndrome, CDKL5 deficiency disorder or Rett syndrome completed the Quality of Life Inventory-Disability (QI-Disability) questionnaire. Latent profile analysis of the QI-Disability domain scores was conducted. RESULTS: The mean (SD) total QOL score was 67.8 (13.4), ranging from 60.3 (14.6) for CDD to 77.5 (11.7) for Down syndrome. Three classes describing domain scores were identified: Class 1 was characterised by higher domain scores overall but poorer negative emotions scores; Class 2 by average to high scores for most domains but low independence scores; and Class 3 was characterised by low positive emotions, social interaction, and leisure and the outdoors scores, and extremely low independence scores. The majority of individuals with autism spectrum disorder and Down syndrome belonged to Class 1 and the majority with CDKL5 deficiency disorder belonged to Class 3. Those with better functional abilities (verbal communication and independent walking were predominately members of Class 1 and those with frequent seizures were more often members of Class 2 and 3. CONCLUSION: The profiles illustrated variation in QOL across a diverse group of children. QOL evaluations illustrate areas where interventions could improve QOL and provide advice to families as to where efforts may be best directed.
Research in developmental disabilities, 2022 · doi:10.1016/j.ridd.2022.104322