Volume 15, Issue 12 pp. 2336-2345
RESEARCH ARTICLE

Using percentiles in the interpretation of Patient-Reported Outcomes Measurement Information System scores: Guidelines for autism

Julia Schuchard

Corresponding Author

Julia Schuchard

Department of General Pediatrics, Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, USA

Correspondence

Julia Schuchard, 2716 South St., Philadelphia, PA, USA.

Email: [email protected]

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Elizabeth A. Kaplan-Kahn

Elizabeth A. Kaplan-Kahn

Department of General Pediatrics, Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, USA

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Adam C. Carle

Adam C. Carle

Cincinnati Children's Hospital Medical Center, University of Cincinnati College of Medicine, University of Cincinnati College of Arts and Sciences, Cincinnati, Ohio, USA

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Laura Graham Holmes

Laura Graham Holmes

Hunter College, City University of New York, New York, New York, USA

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Kiely Law

Kiely Law

Kennedy Krieger Institute, Baltimore, Maryland, USA

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Judith S. Miller

Judith S. Miller

Department of General Pediatrics, Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, USA

Perelman School of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania, USA

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Julia Parish-Morris

Julia Parish-Morris

Department of General Pediatrics, Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, USA

Perelman School of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania, USA

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Christopher B. Forrest

Christopher B. Forrest

Department of General Pediatrics, Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, USA

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First published: 19 October 2022

Funding information: McMorris Family Foundation; National Institutes of Health, Grant/Award Number: R01 HL119441; Patient-Centered Outcomes Research Institute, Grant/Award Number: ME-1403-12211

Abstract

The objectives of this study were to (1) demonstrate the application of percentiles to advance the interpretation of patient-reported outcomes and (2) establish autism-specific percentiles for four Patient-Reported Outcomes Measurement Information System (PROMIS) measures. PROMIS measures were completed by parents of autistic children and adolescents ages 5–17 years as part of two studies (n = 939 parents in the first study and n = 406 parents in the second study). Data from the first study were used to develop autism-specific percentiles for PROMIS parent-proxy sleep disturbance, sleep-related impairment, fatigue, and anxiety. Previously established United States general population percentiles were applied to interpret PROMIS scores in both studies. Results of logistic regression models showed that parent-reported material hardship was associated with scoring in the moderate–severe range (defined as ≥75th percentile in the general population) on all four PROMIS measures (odds ratios 1.7–2.2). In the second study, the percentage of children with severe scores (defined as ≥95th percentile in the general population) was 30% for anxiety, 25% for sleep disturbance, and 17% for sleep-related impairment, indicating a high burden of these problems among autistic children. Few children had scores at or above the autism-specific 95th percentile on these measures (3%–4%), indicating that their scores were similar to other autistic children. The general population and condition-specific percentiles provide two complementary reference points to aid interpretation of PROMIS scores, including corresponding severity categories that are comparable across different PROMIS measures.

DATA AVAILABILITY STATEMENT

The data that support the findings of this study are openly available in PROMIS Pediatric Sleep Dataset at https://dataverse.harvard.edu/dataset.xhtml?persistentId=doi:10.7910/DVN/FINL4U.

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