A reporting checklist for HealthMeasures’ patient-reported outcomes: ASCQ-Me, Neuro-QoL, NIH Toolbox, and PROMIS

Background: ASCQ-Me®, Neuro-QoL™, NIH Toolbox®, and PROMIS®, which are health-related quality of life measures collectively known as HealthMeasures, have experienced rapid uptake in the scientific community with over 1700 peer-reviewed publications through 2018. Because of their proliferation across multiple research disciplines, there has been significant heterogeneity in the description and reporting of these measures. Here, we provide a publication checklist to promote standardization and comparability across different reports. This checklist can be used across all HealthMeasures systems. Checklist Development: Authors drafted a draft checklist, circulated among the HealthMeasures Steering Committee and PROMIS Health Organization until the members reached consensus. Checklist: The final checklist has 21 entries in 4 categories: measure details, administration, scoring, and reporting. Most entries (11) specify necessary measure-specific details including version number and administration language(s). Administration (4 entries) reminds authors to include details such as use of proxy respondents and the assessment platform. Scoring (3 entries) is necessary to ensure replication and cross-study comparisons. Reporting (3 entries) reminds authors to always report scores on the T-score metric. Conclusion: Consistent documentation is necessary to ensure transparent and reproducible methods and support the accumulation of evidence across studies. This checklist promotes standardization and completeness in documentation for ASCQ-Me, Neuro-QoL, PROMIS, and NIH Toolbox measures.