Developing Sets of Survey Questions to Measure Children's Sleep Health [Internet]

Excerpt

Background: Despite extensive evidence that supports sleep as an integral part of child health, no widely adopted self-reported measure of pediatric sleep exists. The NIH-sponsored PROMIS® initiative has produced adult sleep health measures, but pediatric companion instruments have not been developed.

Objectives: To develop and evaluate the validity of pediatric versions of the PROMIS Sleep Disturbance and Sleep-Related Impairments scales.

Methods: This project adhered to PROMIS standards and relevant PCORI Methodological Standards for developing person-reported outcome measures. The pool of items that assess a child's sleep health developed from the item concepts and their expressions from the PROMIS adult sleep health item banks. Additional items were obtained through interviews with sleep medicine experts (n = 8), children aged 8 to 17 years (n = 18), parents of children aged 5 to 17 years (n = 33), and a systematic literature review of all existing pediatric sleep health instruments (n = 329).

Samples of 1104 children aged 8 to 17 and 1477 parents of children aged 5 to 17 years from the general population were obtained from a national internet panel. Statistical and psychometric testing and item response theory (IRT) item calibration were performed using data from these 2 samples. Clinical validity of the final measures was assessed in children with sleep problems recruited from a sleep referral clinic (n = 128) and 9 other chronic and neurodevelopmental condition samples (n = 491).

Results: A total of 5015 participants—1773 children and 3242 parents—contributed to this project. Content validation of the resulting item pool resulted in 43 items. Psychometric evaluation and IRT analyses led to the deletion of 15 items. The final Sleep Disturbance item bank includes 15 items that assess difficulties with falling and staying asleep and with sleep quality. The Sleep-Related Impairment item bank includes 13 items that assess daytime sleepiness, waking up, and the impact of sleepiness on cognitive functioning, mood and behaviors, and daily activities. For each item bank, the researchers produced child self-report editions that can be used for children 8 to 17 years old and parent-proxy editions that can be used for children 5 to 17 years old. Validity of the item banks was supported by moderate correlations with existing measures of pediatric sleep health and significantly higher Sleep Disturbance and Sleep-Related Impairment scores for children with chronic and neurodevelopmental conditions and those with sleep problems.

Conclusions: The PROMIS Pediatric Sleep Disturbance and Sleep-Related Impairment item banks provide precise and valid assessments of a child's difficulties falling and staying asleep as well as level of daytime sleepiness and its impact on daytime functioning. They are ready for use in observational studies of sleep, in clinical trials for medications and devices that influence sleep, and in clinical practice.

Limitations and Subpopulation Considerations: Although the PROMIS sleep health item banks have excellent precision across a wide range of the latent variables, we have not evaluated their responsiveness to clinical change over time. Longitudinal studies that examine sleep health and its relationship to change in health status are a key direction for future research.