Obtain & Administer Measures
PDFs of Neuro-QoLTM measures need no preparation, are “respondent ready” and available for free.
- Use Search & View Measures to find the Neuro-QoL measure you want and download that specific PDF.
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.
Neuro-QoL measures in Spanish can be downloaded in Search & View Measures.
To request any other language, please contact translations@HealthMeasures.net. Note that other available languages are subject to a distribution fee.
Please be sure read the Terms and Conditions of Use for more information.
Neuro-QoL measures can be administered three ways:
- On paper (short forms only)
- By computer
- With an app
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>>
Select Neuro-QoL CATs and Short Forms are available for administration through both the PROMIS® and NIH Toolbox® iPad Apps. Learn more>>
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.”
Appearance of Neuro-QoL Measures
If you are integrating Neuro-QoL measures in a data collection system, follow our guidance for how the items should appear in the respondent interface. This will ensure the measures are administered consistently with how they were developed, tested, and validated. Contact Help@HealthMeasures.net to learn more.
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”).
- Respondents should be instructed to answer all items to the best of their ability. For a respondent who indicates the item asks about an activity they don’t do, instruct them to consider what that activity would be like, and imagine or predict how it would be for them. For example, for the item “Are you able to use a hammer to pound a nail?” imagine the upper body strength, coordination, and dexterity needed to pound a nail with a hammer and evaluate to what degree they have that level of function. Respondents should always have the opportunity to skip an item if needed as well.
- 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.
Modifications to Neuro-QoL Items
Our philosophy is that measures can be improved and we welcome others to make improvements. We believe measurement problems or measure improvements are based upon quantitative and/or qualitative data, not expert opinion alone. If a user feels that she or he can improve a HealthMeasure, she or he is welcome and encouraged to test this modification. Ideally, the problem is identified with data (e.g., respondent misinterpretation of an item, differential item functioning, insufficient content validity). If that user generates data demonstrating that the modification does in fact improve the measure, she or he can submit this modification to HealthMeasures to review for adoption. In contrast, modifications based upon opinion alone (e.g., “I think item calibrations should be country-specific,” “I think high scores should always mean bad,” “I think items should reference a specific disease, condition, or body part”) are not likely to be adopted by HealthMeasures. The HealthMeasures scientific teams and research community have invested significant resources in measure development and validation and modification should not be taken lightly. Keller et al (1997) provide an excellent example of comparing an original and modified measure. In this case, the time frame was altered from four weeks to one week. The HealthMeasures team in collaboration with the PROMIS Health Organization have provided more detail about modifying item text. Learn more>>