Using percentiles in the interpretation of Patient-Reported Outcomes Measurement Information System scores: Guidelines for autism
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]
Search for more papers by this authorElizabeth A. Kaplan-Kahn
Department of General Pediatrics, Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, USA
Search for more papers by this authorAdam 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
Search for more papers by this authorLaura Graham Holmes
Hunter College, City University of New York, New York, New York, USA
Search for more papers by this authorJudith S. Miller
Department of General Pediatrics, Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, USA
Perelman School of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania, USA
Search for more papers by this authorJulia Parish-Morris
Department of General Pediatrics, Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, USA
Perelman School of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania, USA
Search for more papers by this authorChristopher B. Forrest
Department of General Pediatrics, Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, USA
Search for more papers by this authorCorresponding 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]
Search for more papers by this authorElizabeth A. Kaplan-Kahn
Department of General Pediatrics, Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, USA
Search for more papers by this authorAdam 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
Search for more papers by this authorLaura Graham Holmes
Hunter College, City University of New York, New York, New York, USA
Search for more papers by this authorJudith S. Miller
Department of General Pediatrics, Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, USA
Perelman School of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania, USA
Search for more papers by this authorJulia Parish-Morris
Department of General Pediatrics, Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, USA
Perelman School of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania, USA
Search for more papers by this authorChristopher B. Forrest
Department of General Pediatrics, Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, USA
Search for more papers by this authorFunding 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.
Open Research
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.
Supporting Information
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