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

Requirement

Examples

▢Done

The first mention of a measurement system should include the full name of the measurement system

Adult 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)

▢Done

Full domain name

Ability to Participate in Social Roles and Activities

▢Done

Version number

v1.2

▢Done

Measure language(s) used in the study

English and Spanish

▢Done

Respondents for whom measure was developed

Adult

Pediatric

Parent Proxy

▢Done

Measure type

Short form

Computer adaptive test (CAT)

Profile

Scale

Uncalibrated item pool

Numeric rating scale

Checklist

▢Done

Measure citation

Irwin, 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/A

Any 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/A

For PROMIS and NIH Toolbox fixed-length short forms: the number of items and any letter designation

Depression 4a

PROMIS-29 Profile

5-item Hostility Fixed Form

▢Done ▢N/A

For 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/A

If items or a full measure are reprinted in the publication, permission is required. Contact help@HealthMeasures.net to request permission.

Requirement

Examples

▢Done

Respondents who completed the measure

Self-report

Adult caregivers served as proxy respondents for patients

▢Done

Mode of administration

Unassisted in a private area

Mailed to home

Interviewer administered in person Interviewer administered by phone

▢Done

Data collection tool

Paper

REDCap

OBERD

NIH Toolbox iPad app

Epic PROMIS app

▢Done ▢N/A

Stopping parameters for CAT administration

Standard settings

Maximum number of administered items in the CAT was changed from the default to 7

Requirement

Examples

▢Done

Scoring method

Response-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)

▢Done

▢N/A

Calibration sample used for scoring in the HealthMeasures Scoring Service or Assessment Center API; almost always “default”

Default calibrations

▢Done

▢N/A

Look-up table used for scoring fixed length short forms, scales, and profiles, and discussion of how missing data were handled

Scoring tables published in the PROMIS Adult Profile Scoring Manual. Only short forms with responses to all four items were scored.

Requirement

Examples

▢Done

▢N/A

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).

▢Done

Keep 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)

▢Done

Report standard deviations with group means

Mean fatigue scores improved from baseline (T = 64.6, SD = 10.0) to follow-up (T = 55.1, SD = 9.5)