Presenting Neuro-QoL Results

  • The first mention of Neuro-QoL should include its full name: “Quality of Life in Neurological Disorders (Neuro-QoL)”
  • Report the official measure name. The measure name includes the following components:
    • Measure type (i.e., short form, computer adaptive test (CAT), profile, scale, uncalibrated item pool)
      • Note that in some data collection systems, measure are labeled as “item banks.” If the item bank was administered as a computer adaptive test, please refer to the measure as a CAT.
      • Version number (e.g., v1.2)
      • Full domain name (e.g., Cognitive Function). You can find the full domain name on the List of Neuro-QoL Measures pages.
  • Include “Pediatric” or “Parent Proxy” if appropriate
    • Examples:
      • Neuro-QoL Short Form v1.0 – Stigma
      • Neuro-QoL CAT v1.0 – Fatigue
  • All Neuro-QoL scores should be presented as T-scores. The T-score is the standardized score with a mean of 50 and 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., positive-affect and well-being) and sometimes this is undesirable (e.g., fatigue). Do not reverse the score (e.g., high always indicates bad).
      • We recommend utilizing graphs with two Y-axes when presenting symptoms (high scores are not desirable) and function (high scores are desirable) together. For example, here are multiple Neuro-QoL T-scores:

double y axis graph for Neuro QoL

    • There are multiple ways to calculate Neuro-QoL T-scores (e.g., HealthMeasures Scoring Service, Scoring Manual, automatic scoring in a data collection platform). Learn more about your options at Calculate Scores.
  • Sometimes the syntax of a Neuro-QoL item or measure was modified. Any modifications to the syntax including time frame, item text, and response options should be described.
  • Neuro-QoL measures were developed to be completed by self-report (adult and pediatrics age 8+), parent proxy report, or proxy report for an adult. If another method was used (e.g., interview administered), include a description.
  • Include a citation for the Neuro-QoL measure used. If using a short form, citing the publication describing the development of the full item bank is appropriate.
  • If you would like to reprint a Neuro-QoL measure in a publication, you must have written permission. All requests can be emailed to Help@HealthMeasures.net.