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Helpful Resources

In what diseases can Neuro-QoL be used?

Neuro-QoL measures were developed to be appropriate for a range of neurological conditions. They are not disease-specific measures. They were initially validated in five adult (stroke, multiple sclerosis, Parkinson’s disease, epilepsy, and amyotrophic lateral sclerosis [ALS]) and two pediatric conditions (epilepsy and muscular dystrophy). They were subsequently expanded for use in traumatic brain injury (TBI) and spinal cord injury (SCI).

Read more about the use of Neuro-QoL measures and items in Neuro-QoL Publications.

Available Translations

Neuro-QoL measures are available in languages other than English.

Adult Measures

Neuro-QoL Domain Item Bank and Short Forms Available in the Following Languages: Only Short Forms
Anxiety

German, Spanish

(Czech, Danish, French, Italian, Swedish, Turkish translations in progress)

 
Depression German, Spanish

(Turkish translation in progress)

 
Fatigue Arabic, Chinese-Traditional, Czech, Danish, Dutch, Finnish, French, German, Greek, Hebrew, Hungarian, Italian, Japanese, Korean, Norwegian, Polish, Portuguese, Russian, Slovak, Spanish, Swedish, Turkish  
Upper Extremity (Fine Motor, ADL) Czech, French, German, Italian, Norwegian, Polish, Spanish

(Danish, Swedish, Turkish translations in progress)

(Swedish translation in progress)
Lower Extremity (Mobility) Czech, French, German, Italian, Norwegian, Polish, Spanish

(Danish, Swedish, Turkish translations in progress)

(Swedish translation in progress)
Cognitive Function v2.0

 

Chinese-Traditional, German, Spanish

(Czech, Danish, French, Italian, Swedish translations in progress)

 

 
Emotional and Behavioral Dyscontrol

 

German, Spanish

(Czech, Danish, French, Italian, Swedish, Turkish translations in progress)

 

 
Positive Affect and Well-Being

 

Chinese-Traditional, German, Spanish

(Czech, Danish, French, Italian, Swedish,Turkish translations in progress)

 

(Swedish translation in progress)
Sleep Disturbance scale

Chinese-Traditional, German, Spanish

(Czech, Danish, French, Italian, Swedish,Turkish translations in progress)

 
Ability to Participate in Social Roles and Activities         German, Spanish

(Czech, Danish, French, Italian, Swedish,Turkish translations in progress)

(Swedish translation in progress)
Satisfaction with Social Roles and Activities

German, Spanish

(Czech, Danish, French, Italian, Swedish translations in progress)

(Swedish translation in progress)
Stigma Chinese-Simplified, German, Spanish

 

(Czech, Danish, French, Italian, Swedish, Turkish translations in progress)

 

Korean (8-item or SSCI)
Communication scale German, Spanish

(Czech, Danish, French, Italian, Swedish, Turkish translations in progress)

 

 

Pediatric Measures

Neuro-QoL Domain Item Bank and Short Forms Available in the Following Languages: Only Short Forms
Anger Spanish  
Anxiety Spanish Bulgarian, Dutch, French, German, Greek, Italian, Norwegian, Polish, Portuguese, Russian, Turkish
Depression Spanish Bulgarian, Dutch, French, German, Greek, Italian, Norwegian, Polish, Portuguese, Russian, Turkish
Fatigue Croatian, Chinese-Traditional, Czech, Danish, Dutch, Finnish, French, German, Greek, Hebrew, Hungarian, Italian, Korean, Norwegian, Polish, Portuguese, Romanian, Russian, Serbian, Slovak, Slovene, Spanish, Swedish, Turkish  
Social Relations -Interaction with Peers Spanish  
Social Relations -Interaction with Adults (item pool) Spanish  
Pain Spanish Bulgarian, Dutch, French, German, Greek, Italian, Norwegian, Polish, Portuguese, Russian, Turkish
Cognitive Function v2.0 Spanish Bulgarian, Dutch, French, German, Greek, Italian, Norwegian, Polish, Portuguese, Russian, Turkish
Lower Extremity Function (Mobility) Czech, French, German, Italian, Norwegian, Polish, Spanish  
Upper Extremity Function (Fine Motor, ADL) Czech, French, German, Italian, Norwegian, Polish, Spanish  
Stigma Spanish German, French, Italian

 Last updated on January 10, 2018

Translations in Progress

Several groups are currently translating selected Neuro-QoL measures into a variety of languages. Contact us for more information about translating measures.

Obtaining HealthMeasures Translations

For general information on PROMIS, Neuro-QoL or NIH Toolbox and to become familiar with the instruments, please visit the HealthMeasures website: www.healthmeasures.net.

For PROMIS, for example, you can download the available English and Spanish PDFs from the HealthMeasures website: http://www.healthmeasures.net/. Specifically, go to the PROMIS page, select Obtain and Administer Measures, and then click on Download a zip file of all PROMIS measures. To request any other language, please contact translations@healthmeasures.net. Note that other available languages are subject to a distribution fee (see Fees section).

Please be sure read the PROMIS Terms and Conditions of Use for more information.

Translations availability

For information on PROMIS translations availability, please go to http://www.healthmeasures.net/explore-measurement-systems/promis/intro-to-promis/available-translations

For information on Neuro-QoL translations availability, please go to http://www.healthmeasures.net/explore-measurement-systems/neuro-qol/intro-to-neuro-qol/available-translations

If you are interested in obtaining a language not listed on the availability tables, or if you want to translate a measure, please contact translations@healthmeasures.net.

New Translations

HealthMeasures does not directly translate its measures into other languages. However, we do manage all of the translation efforts to ensure quality and consistency. Referral to approved translation vendors can be made by HealthMeasures staff.

The Department of Medical Social Sciences at Northwestern University Feinberg School of Medicine is currently charged with managing the scientific activity surrounding HealthMeasures translations. Please direct all inquiries translations@healthmeasures.net.

For new translations, we issue a letter of permission to translate specifying the name(s) of the measure(s) that can be translated and into which language(s). The permission to translate is valid for six months and can be renewed.

The FACIT Translation Methodology has been adopted by PROMIS, Neuro-QoL and NIH Toolbox PRO measures. It consists of an iterative process of forward and back-translation, multiple reviews, harmonization across languages, and cognitive debriefing with a sample of the target population. Another important aspect to consider is that the approach to translation is universal, which means we aim for language versions that are appropriate for more than one country, rather than country-specific versions of each language. The vendor or group in charge in charge of the translation will need to comply with those directives even if they are used to a different methodology.

For new translations, we conduct a quality review of each translation and verify harmonization across languages for a fee (please see Fees section). The review focuses on verifying consistency in the translation of similar items within the item bank, consistency with previous translations, harmonization with other languages, and whether the documentation of the decision making process is complete. This includes reviewing the cognitive debriefing report.

New translations can be conducted by professional translators or by a group of researchers who are native speakers of the target language and have translation expertise. Regardless of who performs the translation, the methodology, the expectations for documenting the various steps of the translation, and the quality and approval review process are the same.

Fees

Distribution fee - English and Spanish are the only languages available for free PDF download. For all other available languages, we charge a distribution fee of $750 USD per instrument, per language. This distribution fee applies to any PDF that is not currently available for direct download in the HealthMeasures website (www.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 instrument(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.

Quality Review and Harmonization fee - For new translations, we conduct a quality review of each translation and verify harmonization across languages. The review fee is estimated based on a per hour fee vs. the number of items and languages to translate. Time for preparing materials for new translations (i.e., cross-referencing instruments, gathering items already translated for each language, and selecting relevant item definitions) is also included. All costs are submitted in a quote prior to service.

Tech Integration fee – Users who want to integrate HealthMeasures instruments into their own technology need to request written permission to integrate the instrument(s) into their proprietary electronic administration system. The fee charged for the review and approval process varies depending on some specific factors of the study. This fee covers the time spent preparing permissions, providing guidance on design, reviewing screenshots (only the English version that serves as template), and certifying correct scoring. All costs are submitted in a quote prior to service.