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

Researchers created better ways to understand health questionnaire scores for autistic children by comparing them to other autistic children rather than just the general population. They looked at sleep problems, tiredness, and anxiety in nearly 1,400 autistic children. While many autistic children had high scores when compared to all children, most had typical scores when compared to other autistic children. Families experiencing financial hardship were more likely to report higher levels of these problems.

This study established autism-specific percentile rankings for four PROMIS (Patient-Reported Outcomes Measurement Information System) measures to better interpret scores for autistic children aged 5-17 years. Using data from 1,345 parents across two studies, researchers developed autism-specific percentiles for sleep disturbance, sleep-related impairment, fatigue, and anxiety measures. The study found that material hardship was associated with moderate-severe scores across all measures. When using general population percentiles, 30% of autistic children scored in the severe range for anxiety, 25% for sleep disturbance, and 17% for sleep-related impairment.

However, only 3-4% scored at the autism-specific 95th percentile, suggesting these problems are common within the autism community and highlighting the value of condition-specific reference points for clinical interpretation.

This research provides clinicians with autism-specific reference points for interpreting PROMIS scores, enabling better identification of autistic children who need additional support relative to their peers. The findings highlight the importance of considering socioeconomic factors and suggest that condition-specific percentiles offer valuable clinical context alongside general population comparisons.

Study limitations are not explicitly described in the abstract. The sample was limited to parent-proxy reports, which may not capture the child's direct experience. Generalizability may be limited depending on sample demographics and recruitment methods, though these details are not provided.

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.