Obtain & Administer Measures

Obtain

PDFs of Neuro-QoL measures need no preparation, are “respondent ready” and available for free.

Neuro-QoL measures are copyrighted. All English and Spanish version of Neuro-QoL are publicly available for use in one’s individual research, clinical practice, educational assessment, or other application without licensing or royalty fees. Commercial users must seek permission to use, reproduce, or distribute measures. Integration into proprietary technology requires written permission. Read the Neuro-QoL Terms and Conditions of Use for more information.

Administer

Neuro-QoL measures can be administered three ways:

  • On paper (short forms only)
  • By computer
  • With an app

Computer Administration
Neuro-QoL Computer Adaptive Tests (CATs) require computer administration. Neuro-QoL CATs and short forms are available in:

  • REDCap: a secure web application for building and managing online surveys. Learn more>>
  • Assessment CenterSM: a web-based data collection platform. Learn more>>
  • Assessment Center Application Programming Interface (API): an API connects your data collection software application with the full library of Neuro-QoL measures, including CATs. Learn more>>

Application Adminsitration
Select Neuro-QoL CATs and Short Forms are available for administration through both the PROMIS® and NIH Toolbox® iPad Apps. Learn more>> 

Proxy Respondents
Neuro-QoL adult and pediatric measures can be completed by a proxy (e.g., parent, caregiver) respondent when needed. Proxy administration requires first administering instructions to the respondent. Then, the self-report form of a measure is administered.

For parent proxy responders completing a measure on behalf of a child, these instructions should be administered first:

“The following questionnaires will ask about your child’s symptom and activity levels; his/her ability to think, concentrate and remember things; questions specific to his/her condition, and questions related to his/her quality of life. Please answer the following questions based on what you think your child would say.”

For caregiver proxy responders completing a measure on behalf of an adult, these instructions should be administered first:

“The following questionnaires will ask about your care recipient’s symptom and activity levels; his/her ability to think, concentrate and remember things; questions specific to his/her condition, and questions related to his/her quality of life. Please answer the following questions based on what you think your care recipient would say.”

Best Practices in Administration

  • Neuro-QoL self-report measures are intended to be completed by the respondent without help from anyone else.
  • If respondents are unable to answer on their own, have someone else (“proxy”) report on their behalf. Respondents requiring a proxy may include: young children, people in the early stages of dementia who may not recognize the extent of their impairment, people with cognitive or communication deficits, and people with severe disease burden. There are specific instructions for a proxy to read prior to completing a measure.
  • Keep respondents’ privacy in mind, but have staff readily available to help with any technology issues that may arise.
  • It is acceptable for staff to define a term (e.g., “nausea”), but not to define a concept where the respondent’s subjective interpretation is the goal of the question (e.g., “quality of life”).
  • Utilize the same method (e.g., computer, telephone or paper) and mode of administration (e.g., self vs. interviewer).
  • In clinical settings, give respondents the optimal time needed to provide complete data at the appropriate time (e.g., before/after clinician visits, or in between visits). This may depend on the study aims and/or clinic work flow.
  • The text and responses of Neuro-QoL items cannot be altered in any way and still be considered a Neuro-QoL item. Users are welcome to modify the items, but cannot refer to these modified items as Neuro-QoL and we have no data about whether or not this modified version would have the same psychometric properties as the original Neuro-QoL item.  If you do modify items, please clearly specify in what ways the items were modified in any publications or other publicly disseminated work products.