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Literature DB >> 31728808

Pediatric Quality of Life Inventory (PedsQL) in Fragile X Syndrome.

Sarah E Fitzpatrick¹, Lauren M Schmitt¹, Ryan Adams^2,3, Ernest V Pedapati^1,4, Logan K Wink^1,4, Rebecca C Shaffer^2,3, Jessica Sage¹, Jayne Dixon Weber⁵, Kelli C Dominick^1,4, Craig A Erickson^6,7.

Abstract

To date, health related quality of life (QoL) has not been systematically evaluated in youth with fragile X syndrome (FXS), the most common single gene cause of autism and the most common inherited form of developmental disability. We describe QoL data gathered using the Pediatric Quality of Life Inventory (PedsQL) completed online by 364 parents of youth with FXS. Parents consistently reported across all gender and age groups that their children experienced the highest QoL in Physical functioning and the lowest QoL in Cognitive functioning. Overall, older children with FXS had increase QoL ratings in the domains of School and Cognitive function.

Entities: Chemical Disease Gene Species

Keywords: Developmental disability; Fragile X syndrome; Quality of life

Mesh：

Year: 2020 PMID： 31728808 PMCID： PMC7232688 DOI： 10.1007/s10803-019-04292-7

Source DB: PubMed Journal: J Autism Dev Disord ISSN： 0162-3257

30 in total

1. Trajectories of emotional well-being in mothers of adolescents and adults with autism.

Authors: Erin T Barker; Sigan L Hartley; Marsha Mailick Seltzer; Frank J Floyd; Jan S Greenberg; Gael I Orsmond
Journal: Dev Psychol Date: 2011-03

2. Using a parent survey to advance knowledge about the nature and consequences of fragile X syndrome.

Authors: Donald B Bailey; Melissa Raspa; Murrey G Olmsted
Journal: Am J Intellect Dev Disabil Date: 2010-11

3. Moving from the quality of life concept to a theory.

Authors: R A Cummins
Journal: J Intellect Disabil Res Date: 2005-10

4. The Aberrant Behavior Checklist-Community: factor validity and effect of subject variables for adults in group homes.

Authors: M G Aman; W H Burrow; P L Wolford
Journal: Am J Ment Retard Date: 1995-11

5. Friendships and social participation as markers of quality of life of adolescents and adults with fragile X syndrome and autism.

Authors: Leann Smith DaWalt; Lauren V Usher; Jan S Greenberg; Marsha R Mailick
Journal: Autism Date: 2017-12-12

Review 6. Drug development for neurodevelopmental disorders: lessons learned from fragile X syndrome.

Authors: Elizabeth M Berry-Kravis; Lothar Lindemann; Aia E Jønch; George Apostol; Mark F Bear; Randall L Carpenter; Jacqueline N Crawley; Aurore Curie; Vincent Des Portes; Farah Hossain; Fabrizio Gasparini; Baltazar Gomez-Mancilla; David Hessl; Eva Loth; Sebastian H Scharf; Paul P Wang; Florian Von Raison; Randi Hagerman; Will Spooren; Sébastien Jacquemont
Journal: Nat Rev Drug Discov Date: 2017-12-08 Impact factor: 84.694

Pediatric Quality of Life Inventory (PedsQL) in Fragile X Syndrome.

1. Trajectories of emotional well-being in mothers of adolescents and adults with autism.

2. Using a parent survey to advance knowledge about the nature and consequences of fragile X syndrome.

3. Moving from the quality of life concept to a theory.

4. The Aberrant Behavior Checklist-Community: factor validity and effect of subject variables for adults in group homes.

5. Friendships and social participation as markers of quality of life of adolescents and adults with fragile X syndrome and autism.

Review 6. Drug development for neurodevelopmental disorders: lessons learned from fragile X syndrome.

Review 7. Cognitive development following pediatric solid organ transplantation.

8. Fragile X syndrome: causes, diagnosis, mechanisms, and therapeutics.

9. Fragile X syndrome: economic burden and health-related quality of life of patients and caregivers in France.

Review 10. Psychopharmacology in fragile X syndrome--present and future.

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

2. Health-Related Quality of Life in Pediatric Patients with Syndromic Autism and their Caregivers.