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.
Neuro-QoLTM measures are available in languages other than English.
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.
Neuro-QoL measures in Spanish are available in PDF format. Respondent-ready versions of measures in other languages are available by request. Learn more>>
Please be sure read the Neuro-QoL Terms and Conditions of Use for more information.
If you are interested in obtaining a language not listed on the availability tables, or if you want to translate a measure, please contact email@example.com.
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 firstname.lastname@example.org.
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 (see Eremenco et al, 2005) has been adopted by PROMIS, Neuro-QoL and NIH Toolbox® patient-reported outcome (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 of the translation will need to comply with this approach. Descriptions of consensus-based best practices in translation methods are available. See Eremenco et al, 2018 for PRO measures and McKown et al, 2020 for observer-reported outcome, clinician-reported outcome, and performance outcome measures.
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.
Distribution fee – English and Spanish measure PDFs are available to download for free. For all other available languages, as of September 1, 2020, we charge a distribution fee of $800 USD per measure, per language. This distribution fee applies to any measure 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 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.
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 measures, 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 into their own technology need to request written permission to integrate the measure(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.