Measuring PROMIS® Well-Being in Early Childhood

Abstract

Objective Expand the current Patient-Reported Outcome Measurement Information System (PROMIS®) well-being measures to early childhood (1–5 years) using best practices from PROMIS and developmental science. Methods Qualitative methods included expert input, literature and measure review, and parent interviews to confirm measure frameworks, item understandability, and developmental appropriateness. Quantitative methods included two waves of field testing and item response theory (IRT)-based psychometric evaluation of reliability and validity, as well as IRT centering and item calibration. Correlational analyses with other PROMIS Early Childhood (EC) Parent Report measures and known-group differences analyses by health status were conducted to evaluate construct validity. All measures were normed to the general U.S. population. Results Qualitative results suggested three primary early childhood well-being domains: Positive Affect, Engagement, and Self-Regulation. Quantitative results revealed a unidimensional factor structure for Positive Affect and multidimensional factor structures for Engagement and Self-Regulation, both of which had two factors accounting for >10% of modeled variance reflecting unique unidimensional domains. This resulted in five final PROMIS EC well-being measures: Positive Affect, Engagement—Curiosity, Engagement—Persistence, Self-Regulation—Flexibility, and Self-Regulation—Frustration Tolerance. Correlations and known-groups differences analyses showed robust construct validity across a range of chronic health conditions. Conclusions The new PROMIS EC Parent Report well-being measures offer clinicians and researchers a brief, efficient, and precise way to evaluate young children’s well-being. All five measures include only positively valanced item content, which pushes the field to evaluate the presence of children’s positive assets rather than the absence of problems.

Codesign of remote data collection for chronic management of pediatric home mechanical ventilation

“…Data collection included patient heart rate (HR), RR, oxygen saturation (SpO 2 ), EtCO 2 , measured ventilator pressure/volume, and ventilator screen videos. All parents were sent a survey by text and email using REDCap (Research Electronic Data Capture, Northwestern University) using Twilio (Twilio®) texting plug‐in with the selected PROs that asked about the child's fatigue level, sleep quality, and positive affect over the past week 31,32 . For patients taking breaks off the ventilator, parents were asked about the child's typical time off the ventilator and level of work of breathing, breathing speed, and level of energy at the end of breaks compared to normal for their child (1 “Much more” to 2 “Much less”).…”

How to measure patient and family important outcomes in extremely preterm infants: A scoping review

“…Exclusion criteria were questionnaires that were (1) outside the age group 18–24 months; (2) required patient self‐reporting; (3) were not available in English; and (4) had scales that were intended for specific disease populations. The Patient‐Reported Outcome Measurement Information System Early Childhood (PROMISE‐EC) 11 was the only tool that specifically targeted early childhood well‐being. There is a four‐question short form as well as a long form.…”

“…The Infant‐Toddler Social Emotional Assessment (ITSEA) 15 targets social emotional behaviour and the Infant Characteristics Questionnaire 16 measures temperament. The PROMIS‐EC 11 was recommended because it aligned most closely with the concept of well‐being. The short form is suitable for a minimum dataset and the long form provides more data for research targeting this domain.…”

“…Exclusion criteria were age beyond 24 months, studies of sleep diary/log, actigraphy or polysomnography, clinical studies that did not describe the questionnaire and reviews. Six questionnaires were identified and three were useful for our Canadian preterm population: PROMIS‐EC sleep questionnaire short and long form, 11 Brief Infant Sleep Questionnaire, 32 and the Infant Sleep Questionnaire 33 . The PROMIS‐EC short form with four questions was recommended for a minimum dataset.…”

“…In the end, four questionnaires were assessed: Pediatric Evaluation of Disability Inventory-Computer Adaptive Test (PEDI-CAT),17 the Adaptive Behavior Assessment Scale-3rd version,18 The literature search used the terms 'behavior/social emotional development' AND 'infant*, toddler*' AND (questionnaire*, instrument*, scale*, checklist*). Nine questionnaires were reviewed: Survey of Well-Being of Children (SWYC),21 the Temperament and Atypical Behavior Scale,22 the Parents' Evaluation of Developmental Status: Developmental Milestones (PEDS:DM),23 Ages and Stages Questionnaire 3rd edition,24 Child Behavior Checklist 1 1/2-5, 25 the Devereux Early Childhood Assessment Infants for Infants and Toddler,26 ITSEA,15 and the PROMIS-EC 11. The SWYC was chosen because it is an easy to use free short questionnaire which includes developmental milestones, assesses family risk factors, and has a risk assessment for autism spectrum disorder.…”