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Quality of Life in School-Aged Youth Referred to an Autism Specialty Clinic: A Latent Profile Analysis

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Abstract

We examined whether different profiles of quality of life (QoL) existed among youth referred to an autism spectrum disorder (ASD) specialty clinic and, if present, determined if these groups were associated with different characteristics. Data were from parental report of 5–17 year-old youth (N = 476) who were scheduled to receive an evaluation at an ASD clinic. Parents completed questionnaires, including the Pediatric Quality of Life Inventory, assessing child and family functioning; providers reported diagnostic impressions. A latent profile analysis found five distinct groups: Low Risk, School Problems, Only Social Emotional Problems, and two Physical/Social Emotional Problems. The groups differed on clinical characteristics and family functioning. These findings have implications for more efficient and effective evaluations in service delivery systems serving complex patients.

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Acknowledgments

We thank the patients of Kennedy Krieger Institute’s Center for Autism and Related Disorders for agreeing to contribute de-identified data for the purposes of advancing research and science. This study was not grant funded.

Funding

This study was funded, in part, by the Intellectual Developmental Disabilities Research Center (U54 HD079123).

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Authors and Affiliations

  1. Department of Mental Health, Johns Hopkins Bloomberg School of Public Health, 615 North Wolfe Street, Baltimore, MD, 21205, USA

    Gazi F. Azad & Luke Kalb

  2. Department of Psychiatry and Behavioral Sciences, Johns Hopkins School of Medicine, 733 North Broadway, Baltimore, MD, 21205, USA

    Emily Dillon, Julie Feuerstein & Rebecca Landa

  3. May Institute, 41 Pacella Park Drive, Randolph, MA, 02368, USA

    Jason Neely

  4. Kennedy Krieger Institute’s Center for Autism and Related Disorders, 3901 Greenspring Avenue, Baltimore, MD, 21211, USA

    Gazi F. Azad, Emily Dillon, Julie Feuerstein, Luke Kalb, Jason Neely & Rebecca Landa

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  1. Gazi F. Azad
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Contributions

All authors conceived the presented idea. GA primarily wrote the manuscript with support from the co-authors. LK did the analyses. RL provided guidance and edited the manuscript.

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Correspondence to Gazi F. Azad.

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All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

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Informed consent was obtained from all individual participants included in the study.

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Azad, G.F., Dillon, E., Feuerstein, J. et al. Quality of Life in School-Aged Youth Referred to an Autism Specialty Clinic: A Latent Profile Analysis. J Autism Dev Disord 50, 1269–1280 (2020). https://doi.org/10.1007/s10803-019-04353-x

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