Obtain & Administer Measures

Neuro-QoL™ measures are available as “respondent ready” PDFs and in numerous administration platforms.

Paper-based Measures

PDFs of Neuro-QoLTM measures in English need no preparation, are “respondent ready,” and are available for free for paper administration.

Digital Measures

Neuro-QoL measures are available for digital administration. 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 Center Application Programming Interface (API): an API connects your administration platform with the full library of Neuro-QoL measures, including CATs. Learn more>>
  • PROMIS® iPad App and NIH Toolbox® iPad App. Learn more>> 
  • Many other software platforms. Learn more>>

Permission for Electronic Administration

Integrating a Neuro-QoLTM measure into an electronic or digital administration platform requires HealthMeasures Electronic Administration Permission (HEAP), which includes a permission letter and screenshot review; the screenshot review ensures the electronic administration retains validity.

Single research studies (randomized controlled trials, cohort studies, case control studies, cross-sectional studies) by non-commercial users (i.e., any institution, organization, or other incorporated entity which is defined as a Tax-Exempt Organization under the regulations of the United States’ Internal Revenue Service; for users outside the United States, all not-for-profit entities including national health services and their affiliate providers and academic institutions) are exempt from the HEAP requirement. However, you may still opt for HEAP to support validity in your research.

A HEAP fee is charged for the review and approval process. This fee covers the time spent preparing permissions and , providing guidance on the appearance of Neuro-QoLTM items in the respondent interface. HEAP fees are listed under Static Forms on the Pricing for Software Applications page. Contact help@HealthMeasures.net to obtain HEAP and for additional information.

Obtaining Translations

Permission for Use

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.

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.”

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.

Measure Names in Administration Platforms

Measure names may be abbreviated or use altered terms in some administration platforms.

  • Measures named “Item Banks” are administered as Computer Adaptive Tests (CATs). In any administration platform, a measure named Item Bank is the same as a CAT.
  • SF = short form
  • Ped = pediatric
  • NRS = numeric rating scale (e.g., 0 to 10)
  • Scale = a set of items that are administered in their entirety. They are not a subset of items from an item bank.
  • Profile = a fixed set of short forms or CATs that are administered together (e.g., PROMIS-29). They produce scores for multiple domains (e.g., physical function, pain interference, anxiety).
  • Battery = a set of measures that are administered together that produce multiple scores.
  • Pool = a collection of items that are not calibrated using item response theory. Item pools only generate raw response scores for each item and no summary score.

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 (see above) for proxies to read prior to completing a Neuro-QoL measure.
  • Use the same proxy across multiple assessments. Different proxies may have different perspectives.
  • 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 workflow. Learn more>>

Disinfecting Shared Devices

When a shared device (e.g., tablet computer) is used to administer measures, it is critical that the device is disinfected between users. The Center for Disease Control (CDC) recommends 1) using a wipeable cover and 2) following manufacturer’s instructions for cleaning and disinfecting. Learn more>>

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. Modifications may alter how an item performs and invalidate scoring. Our guidance for modifying Neuro-QoL measures varies on the intended use. Learn more>>

 

Last updated on 2/5/2024