Background: Sleeping well is essential for children’s mood, energy levels, ability to fight infections, and performance in school. Children should spend up to 40 percent of their day sleeping. Up to 30 percent of children are affected by sleep problems. Despite sleep’s importance to health, there is no standard or commonly used patient-reported measure of children’s sleep. Those that have been developed were neither informed by stakeholders nor created in accordance with rigorous measurement science.
The National Institutes of Health’s Patient Reported Outcomes Measurement Information System (PROMIS) has developed sleep health item banks for adults, but it has yet to develop pediatric versions. Moreover, PROMIS has recommended profiles of measures. The most commonly used PROMIS Adult Profile has 29 items and includes anxiety, depression, fatigue, pain, physical function, sleep, and social role participation. The PROMIS Pediatric Profile includes the same measures, adapted for children, with one exception: no sleep measure.
Recognizing the need to develop pediatric sleep item banks for PROMIS, we conducted preliminary studies by interviewing sleep experts, parents, and children, identifying every pediatric sleep health measure previously developed, and creating preliminary sleep measures that are ready for further testing and validation.
Objectives: Produce developmentally appropriate pediatric PROMIS sleep health measures with versions for both child self-report (ages 8 and up) and parent-proxy (for children ages 5 and up).
Methods: The study will involve:
- interviews with children and parents to ensure that the items are well understood,
- a survey of 3,900 children and parents,
- psychometric analyses to refine the sleep measures and ensure that they are valid, and
- production of a recommended set of questionnaires for clinicians, patients, and researchers interested in assessing children’s sleep health.
Patient and Stakeholder Engagement: Our patient- and family-centered research partnership includes 20 individuals from five stakeholder groups (parents, youth, advocates, clinicians, and researchers). This partnership will design, oversee, and lead the project. Research operations will be managed by a team composed of one member from each of the five stakeholder groups plus project staff.
Anticipated Impacts: The newly developed PROMIS pediatric sleep health measures will enable patients and families to express how health conditions and healthcare treatments affect their sleep in clinical settings, research, and health-promotion applications. By harmonizing the PROMIS pediatric sleep measures with their adult counterparts, we will enable assessment of sleep health from ages 5 to 85.