Agreement in quality of life assessment between adolescents with intellectual disability and their parents.
Parents and teens with ID rarely see eye-to-eye on quality of life—always score both sides and dig deeper when health ratings differ.
01Research in Context
What this study did
Golubović et al. (2013) asked 47 teens with intellectual disability and their parents to rate the teen’s quality of life. They also asked 47 typical teens and their parents the same questions.
Each pair filled out the Kidscreen-27 scale. It covers physical health, mood, school life, and friends. The team then compared how close the two sets of scores were.
What they found
Parents and teens with ID agreed only modestly. Their match was much weaker than the match seen in typical families.
The biggest gap was in physical health. Teens usually said they felt fine, while parents often reported more health worries.
How this fits with other research
Whaling et al. (2025) built a newer tool called the QoLI-PE for younger students with IDD. Their work supersedes the 2013 study by giving practitioners a validated scale that flags emotional wellbeing and self-determination as key areas to watch.
Bhaumik et al. (2009) came first. Their FQOLS-2006 survey looked at whole-family quality of life. Golubović et al. (2013) extends that idea by zooming in on the teen-parent pair and showing where their views clash.
Sheridan et al. (2013) surveyed teens the same year, but asked about attitudes, not QoL. Both papers used high-school samples with ID, proving large-scale teen surveys are doable.
Why it matters
If you write goals or track progress for teens with ID, collect both the teen’s and the parent’s voice. Expect the largest disagreements when you ask about health, and plan to probe further. Using a newer tool like the QoLI-PE can give you clearer domain scores and help you target interventions where they are needed most.
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02At a glance
03Original abstract
Intellectual disability affects different aspects of functioning and quality of life, as well as the ability to independently assess the quality of life itself. The paper examines the agreement in the quality of life assessments made by adolescents with intellectual disability and their parents compared with assessments made by adolescents without intellectual disability and their parents. Participants included 67 adolescents with intellectual disability and the same number of their parents. Control group consisted of 122 typically developed adolescents and an equal number of their parents. In order to assess the quality of life we used The PedsQL 4.0 Generic Core Scale questionnaire, for adolescents aged between 13 and 18 and their parents. Agreement in assessing quality of life between adolescents and parents was analyzed using t-test, Kappa Statistics and Pearson correlation. The agreement between adolescents with intellectual disability and their parents was found to be acceptable (k=0.43), while the agreement between adolescent from control group and their parents was judged to be good (k=0.84). Correlations between adolescents with intellectual disability and their parents varied across subscales from weak (r=0.31) on the physical health subscale to moderate (r=0.56) on the social subscale. Adolescents with intellectual disability were less satisfied with their social functioning. The highest agreement, as well as the lowest means value was found on the social agreement scale. Assessment of the quality of life by both adolescents and their parents provides a comprehensive insight into functioning and different aspects of quality of life in these adolescents.
Research in developmental disabilities, 2013 · doi:10.1016/j.ridd.2013.03.006