Examination of Correlates to Health-Related Quality of Life in Individuals with Fragile X Syndrome

• Published in: Brain sciences Vol. 10; no. 4; p. 213
• Main Authors: Coffman, Marika C, Shaffer, Rebecca C, Schmitt, Lauren M, Dominick, Kelli C, Pedapati, Ernest, Wang, Angel, Berry-Kravis, Elizabeth, Tartaglia, Nicole, Erickson, Craig A
• Format: Journal Article
• Language: English
• Published: Switzerland MDPI AG 04.04.2020; MDPI
• Subjects: adaptive behavior; Anxiety; Autism; Behavior; Caregivers; Children & youth; Clinical trials; Cognitive ability; Communication; Developmental disabilities; Fragile X syndrome; Gender differences; health-related quality of life; Intellectual disabilities; Parents & parenting; Quality of life; Social behavior; Social research; Socialization; Studies; United States > US; Colorado; health-related quality of life; adaptive behavior; quality of life; fragile X syndrome
• ISSN: 2076-3425; 2076-3425
• DOI: 10.3390/brainsci10040213

Health-related quality of life (HRQoL) is a multidimensional concept involving physical, psychological, social, and cognitive aspects of life. Individuals with Fragile X syndrome (FXS) experience a life-long disorder that impacts the HRQoL of the affected individual and their family. Thus, HRQoL may be an important outcome measure following intervention. However, it is yet not known whether HRQoL concerns relate to observed impairments in FXS. In the present study, we examined the nature and degree of association between HRQoL and established measures of functioning in FXS using the Parent Report for Children version of the PedsQL 4.0 Generic Core Scales and Cognitive Functioning Scale. We observed significant relationships between HRQoL a nd measures of adaptive behavior, maladaptive behaviors, and social functioning. The present study has implications for treatment outcomes for clinical trials in FXS.