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

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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.

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Funding

This work was supported by the Cincinnati Children’s Hospital Medical Center Research Foundation (CAE, EVP) and the Division of Child and Adolescent Psychiatry at Cincinnati Children’s Hospital Medical Center (CAE, EVP, KCD).

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Authors and Affiliations

  1. Division of Child and Adolescent Psychiatry, Cincinnati Children’s Hospital Medical Center, 3333 Burnet Avenue MLC 4002, Cincinnati, OH, 45229, USA

    Sarah E. Fitzpatrick, Lauren M. Schmitt, Ernest V. Pedapati, Logan K. Wink, Jessica Sage, Kelli C. Dominick & Craig A. Erickson

  2. Division of Developmental and Behavioral Pediatrics, Cincinnati Children’s Hospital Medical Center, Cincinnati, OH, USA

    Ryan Adams & Rebecca C. Shaffer

  3. Department of Pediatrics, University of Cincinnati College of Medicine, Cincinnati, OH, USA

    Ryan Adams & Rebecca C. Shaffer

  4. Department of Psychiatry and Behavioral Neuroscience, University of Cincinnati College of Medicine, Cincinnati, OH, USA

    Ernest V. Pedapati, Logan K. Wink, Kelli C. Dominick & Craig A. Erickson

  5. The National Fragile X Foundation, McLean, USA

    Jayne Dixon Weber

Authors
  1. Sarah E. Fitzpatrick
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  2. Lauren M. Schmitt
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  3. Ryan Adams
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  4. Ernest V. Pedapati
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  5. Logan K. Wink
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  6. Rebecca C. Shaffer
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  7. Jessica Sage
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  10. Craig A. Erickson
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Contributions

SEF wrote the initial manuscript draft and participated in the analysis. LMM edited the manuscript and participated in the analysis. RA was the primary statistical analyst on the project and edited and wrote portions of the manuscript. EVP edited the manuscript, contributed to results interpretation and experiment conceptualization. LKW edited the manuscript, contributed to results interpretation and experiment conceptualization. KCD edited the manuscript, contributed to results interpretation and experiment conceptualization. RCS edited the manuscript, contributed to results interpretation and experiment conceptualization. JS edited the manuscript, participated in results interpretations, and facilitated data collection. JDW edited the manuscript, participated in results interpretations, and facilitated data collection. CAE conceptualized the experiments, participated in data collection, edited and wrote portions of the manuscript and is responsible for the project.

Corresponding author

Correspondence to Craig A. Erickson.

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No authors have a conflict financially or otherwise related to the content of this manuscript.

Ethical Approval

This research using online survey report involved analysis of deidentified data and therefore according to our local IRB does not constitute human subjects research requiring consent and local IRB approval and was determined to be exempt from such oversight.

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Fitzpatrick, S.E., Schmitt, L.M., Adams, R. et al. Pediatric Quality of Life Inventory (PedsQL) in Fragile X Syndrome. J Autism Dev Disord 50, 1056–1063 (2020). https://doi.org/10.1007/s10803-019-04292-7

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