Skip to main content

Table 1 Reporting checklist for ASCQ-Me, Neuro-QoL, NIH Toolbox Emotion, and PROMIS

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

Measure Details
DoneThe first mention of a measurement system should include the full name of the measurement systemAdult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me),
Quality of Life in Neurological Disorders (Neuro-QoL),
NIH Toolbox for the Assessment of Neurological and Behavioral Function(NIH Toolbox),
Patient-Reported Outcomes Measurement Information System (PROMIS)
DoneFull domain nameAbility to Participate in Social Roles and Activities
DoneVersion numberv1.2
DoneMeasure language(s) used in the studyEnglish and Spanish
DoneRespondents for whom measure was developedAdult
Parent Proxy
DoneMeasure typeShort form
Computer adaptive test (CAT)
Uncalibrated item pool
Numeric rating scale
DoneMeasure citationIrwin, D., Gross, H., Stucky, B., Thissen, D., Morgan DeWitt, E., Lai, J.S., et al. (2012). Development of six PROMIS pediatrics proxy-report item banks. Health and Quality of Life Outcomes, 10 (1), 22.
Done N/AAny modifications to the time frame, item text, or response options.Because the Time 2 assessment occurred 5 days after Time 1, item text was changed from “In the past 7 days” to “In the past 3 days.”
Done N/AFor PROMIS and NIH Toolbox fixed-length short forms: the number of items and any letter designationDepression 4a
PROMIS-29 Profile
5-item Hostility Fixed Form
Done N/AFor custom short forms: how the items were selected, the item bank from which items were selected, and the number of items used.Eight items reflecting poor functioning were selected from the Neuro-QoL v1.0 Lower Extremity Function Mobility Item Bank. Items were selected based upon their item characteristic curves and content.
Done N/AIf items or a full measure are reprinted in the publication, permission is required. Contact to request permission. 
DoneRespondents who completed the measureSelf-report
Adult caregivers served as proxy respondents for patients
DoneMode of administrationUnassisted in a private area
Mailed to home
Interviewer administered in person Interviewer administered by phone
DoneData collection toolPaper
NIH Toolbox iPad app
Epic PROMIS app
Done N/AStopping parameters for CAT administrationStandard settings
Maximum number of administered items in the CAT was changed from the default to 7
DoneScoring methodResponse-pattern scoring (used by HealthMeasures Scoring Service, REDCap auto-score, Assessment Center API, PROMIS and NIH Toolbox iPad apps)
Raw sum score to T-score look-up table (from Scoring Manual)
Calibration sample used for scoring in the HealthMeasures Scoring Service or Assessment Center API; almost always “default”Default calibrations
Look-up table used for scoring fixed length short forms, scales, and profiles, and discussion of how missing data were handledScoring tables published in the PROMIS Adult Profile Scoring Manual. Only short forms with responses to all four items were scored.
Measure scores should be presented as T-scores.Participants in the intervention group had anxiety symptoms in the moderate range (Neuro-QoL T = 65, SD = 9.0).
DoneKeep T-scores on their original scale. Do not reverse scores numerically (e.g., do not change T = 60 to T = 40).Participants reported moderate impairment in fatigue (T = 62.2, SD = 8.0) and physical function (T = 37.5, SD = 8.1)
DoneReport standard deviations with group meansMean fatigue scores improved from baseline (T = 64.6, SD = 10.0) to follow-up (T = 55.1, SD = 9.5)