PROMIS® Canada

What is PROMIS®?

PROMIS® (Patient-Reported Outcomes Measurement Information System) is a set of person-centered measures to assess how people feel and function. PROMIS® uses advances in information technology, psychometrics, and qualitative, cognitive, and health survey research to measure self-reported outcomes such as pain, fatigue, physical function, emotional distress, and participation that impact quality-of-life.

PROMIS® was originally developed and funded through an initiative by the US National Institutes of Health to assess physical, emotional, and social health in adults and children in the general population and those living with a chronic condition. PROMIS® is rapidly becoming the international standard for PROs in clinical trials, registries, and health care systems.

The PROMIS® family of measures includes Neuro-QoL® for Neurological Conditions, NIH Toolbox®, ASCQ-Me® (Sickle Cell Disease), TBI-QO® (Traumatic Brain Injury), and SCI-QOL® (Spinal Cord Injury). HealthMeasures is the official information center for these measures.

You can learn more about the PROMIS® here.

Why use PROMIS®?

PROMIS® measures are: 

  • Easily Accessible – PROMIS® measures are publicly available without a license, fee, or royalty
  • Developed and validated with state-of-the-science methods to be psychometrically sound and to transform how life domains are measured
    • Flexible Administration – Available in short forms and computer adaptive tests (CATS) and easily integrated into diverse administration platforms.
    • Standardized Scoring – Scores from different measures are easily comparable and interpretable
    • Created to be relevant across all conditions for the assessment of symptoms and functions
  • Designed to enhance communication between clinicians and patients in diverse research and clinical settings
  • Available in English, French,  and over 40 other languages

What PROMIS® measures are available?

Currently, there are over 550 measures of physical, mental, and social health for use with the general population and with individuals living with chronic conditions.

Measures are available as short forms, profile measures, or as computerized adaptive tests using item banks. Try a PROMIS® Computer Adaptive Test (CAT) here.

How can I obtain and administer PROMIS® in Canada?

Paper-based Measures

PDFs of PROMIS® measures need no preparation, are “respondent ready,” and are available in English for free at healthmeasures.net.

Digital Measures

PROMIS® measures are available for digital administration. Computer adaptive tests (CATs) require digital administration. PROMIS® CATs, short forms, and profiles are available in English in:

Obtain French Translations

Investigators at McGill University have partnered with PROMIS® to translate and culturally validate many PROMIS® measures into French. For more information about obtaining French PROMIS® measures countries, contact PROMIS.Canada@McGill.ca

Only approved versions of PROMIS® translations can be used as outlined in the “PROMIS® Terms of Use“. Translations result from a process of forward and back-translation, multiple expert reviews, harmonization across languages, and cognitive debriefing with a sample of native speakers of the target language (linguistic validation). A universal approach to translation ensures that, whenever possible, one language version is created for multiple countries instead of country-specific versions of the same language.

Click here for a list of currently available PROMIS® translations.

If you are interested in obtaining a French translation of a PROMIS® measure not currently listed as available, please contact us (PROMIS.Canada@McGill.ca). For new translations, we work closely with the HealthMeasures group and use The FACIT Translation Methodology (see Eremenco et al, 2018 for PRO measures and McKown et al, 2020 for observer-reported outcome, clinician-reported outcome, and performance outcome measures).

Distribution fee for French Translations.

Please note that a distribution fee applies to any PROMIS® PDF that is not currently available for direct download on HealthMeasures.net. The fee can be waived in some cases, such as for individual use by students or academic investigators. Commercial users and corporations (for-profit and not-for-profit) are normally expected to pay distribution fees. The distribution fee covers the distribution of the measure(s), the preparation of the license agreement, and the certification of translation(s). All costs are submitted in a quote prior to service. If a license agreement is needed, it will be prepared once acceptance of the quote is confirmed.

Administer PROMIS®

You can integrate many of the PROMIS® directly into your data collection system. We have developed an Application Programming Interface (API) that can connect directly with your administration platform to administer many of the PROMIS® measures as well as other patient reported outcome measures (PROMs) in French and English. Your data are processed on our Canadian servers and stored locally at your site.

Interpret Scores

PROMIS® measures are scored on the T-score metric in which 50 is the mean of a relevant reference population and 10 is the standard deviation (SD) of that population. High scores mean more of the concept being measured. Learn more about interpreting scores including reference populations, cut points, and meaningful change here.

Publication Checklist

Please use this Publication Checklist when writing about PROMIS® in publications and presentations. Checklist categories include measure details, administration, scoring, and reporting.  Access the Publication Checklist here.

McGill Centre For Health Measurement

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