Publication Checklist

• Name the measurement system
  • The first mention of PROMIS should include its full name: “Patient Reported Outcomes Measurement Information System (PROMIS).” Subsequent sentences should use “PROMIS”
  • The first mention of Neuro-QoL should include its full name: “Quality of Life in Neurological Disorders (Neuro-QoL)”
  • The first mention of ASCQ-Me should include its full name: “Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me).” Subsequent sentences should use “ASCQ-Me”
  • The first mention of NIH Toolbox should include its full name: “NIH Toolbox for Assessment of Neurological and Behavioral Function (NIH Toolbox).” Subsequent sentences can abbreviate NIH Toolbox as NIHTB.
  • Do not use the registered trademark (®) or trademark (™). These are used by mark owners and authorized users.
• Report the official measure name. For PROMIS, Neuro-QoL, and ASCQ-Me, the measure name includes the following components:
  • Measure type (i.e., short form, computer adaptive test (CAT), profile (collection of short forms/CATs), scale, uncalibrated item pool)
    • Note that in some data collection systems, measures are labeled as “item banks.” If the item bank was administered as a computer adaptive test, please refer to the measure as a CAT
  • For short forms, the number of items and letter designation if it exists (e.g., Depression 4a)
  • For custom short forms, include how items were selected, the item bank from which items were selected, and the number of items used.
• Version number (e.g., v1.2)
• Full domain name (e.g., Ability to Participate in Social Roles and Activities). You can find the full domain names here:
  • PROMIS Domains
  • Neuro-QoL Domains
  • NIH Toolbox Emotion Domains
  • ASCQ-Me Domains
• Include “Pediatric,” “Early Childhood Parent-Report,” or “Parent Proxy” if appropriate
• Examples
  • PROMIS Short Form v1.0 – Pain Interference 6b
  • PROMIS Pediatric CAT v1.0 – Fatigue
  • PROMIS-29 Profile v2.0
  • PROMIS Scale v1.2 – Global Health
  • Neuro-QoL Short Form v1.0 – Stigma
  • Neuro-QoL CAT v1.0 – Fatigue
  • ASCQ-Me Pain Impact CAT v2.0
• For NIH Toolbox, refer to the NIH Toolbox Administration Manual for the official measure name. This is found at NIHToolbox.org (requires login).
• Specific PROMIS measure names can be found in each measure’s scoring manual on the PROMIS Scoring Manuals page.

All PROMIS, Neuro-QoL, NIH Toolbox Emotion, and ASCQ-Me (other than Medical History Checklist) scores should be presented as T-scores. The T-score is the standardized score with a mean of 50 and a standard deviation of 10. Raw scores should only be reported for uncalibrated items (i.e., item pools). Having T-scores in publications facilitates comparisons between studies.

• Percentiles can be included as additional but not replacement information.
• Higher scores indicate more of the concept being measured. Sometimes this is desirable (e.g., physical function) and sometimes this is undesirable (e.g., fatigue). Do not reverse the score (e.g., high always indicates bad).
  • Note that the direction of ASCQ-Me scores varies depending on the concept being measured. For example, high Pain Episodes scores indicate worse health whereas high Emotional Impact scores indicate better health. Please see the definition of individual ASCQ-Me domains for more information.
• We recommend using graphs with two Y-axes when presenting symptoms (high scores are not desirable) and function (high scores are desirable) together. Here are examples:
  • Multiple Neuro-QoL T-scores
  • Multiple ASCQ-Me T-scores

• Sometimes the syntax of a HealthMeasure item or measure was modified. Any modifications to the syntax, including time frame, item text, and response options, should be described.
• HealthMeasures were developed to be completed by self-report (adults and pediatrics age 8+) or by parent proxy report. If another method was used (e.g., interview administered, proxy report for an adult), include a description of the modification.
• The HealthMeasures team, in collaboration with the PROMIS Health Organization, has provided more detail about modifying item text.

• Include a citation for the measure used. If using a short form, citing the publication describing the development of the full item bank is appropriate.
• Recommended citations for PROMIS measures.
• Recommended citations for Neuro-QoL measures.
• Recommended citations for NIH Toolbox measures.
• Recommended citations for ASCQ-Me measures.

We recommend providing example items or item IDs rather than reprinting a HealthMeasure. If you would like to reprint a HealthMeasure in a publication, you must have written permission. All requests can be emailed to help@HealthMeasures.net.

Note that translated PROMIS items cannot be reprinted except when used as examples in the narrative.