Make New Neuro-QoL Measures

New and adapted Neuro-QoL measures can be created.

Create a Custom Short Form

Any subset of items from a single Neuro-QoL item bank can be administered as a short form. 

  • Only items from the same item bank can be scored together.
  • If items from multiple item banks are desired, create one custom short form per item bank. Each will produce its own score.
  • Patients, clinicians, and researchers can serve as content experts to help select items from the item bank that assess important content. Content balancing may affect short form performance (see Cook et al, 2010 July, Patient Related Outcome Measures, 65-71.
  • Work with a psychometrician to ensure the selected items will assess the expected range of severity experienced by the target respondent population. HealthMeasures psychometricians are available as consultants. Learn more>>
  • If you expect to use the custom short form in non-English languages, review the translated items. The meaning of some items in English may not be able to be replicated in translations. HealthMeasures translation experts are available as consultants. Learn more>>
  • A custom short form can be scored using the HealthMeasures Scoring Service and the Assessment Center API.
  • See Cook et al (2011) for an excellent example of creating a custom PROMIS fatigue short form for use by people with multiple sclerosis.

Cook, K.F., Bamer, A.M., Roddey, T.S. et al. (2012). A PROMIS fatigue short form for use by individuals who have multiple sclerosis. Qual Life Res 21, 1021–1030.

Share Your Custom Short Form

HealthMeasures users can disseminate information about custom short forms in the HealthMeasures Forum. Measure information should include:

  1. Name of the custom form (CF). The name should include (in the following order):
    1. Measurement system(s) from which the items were selected (e.g., Neuro-QoL).
    2. Domain/bank name from which the items were selected (e.g., Stigma); this element can be omitted if multiple domains are represented (i.e., the custom form is a custom profile).
    3. CF (if one domain) or Custom Profile (if multiple domains).
    4. Version number of bank from which items were selected; omit if custom profile.
    5. Protocol number or project name that identifies the purpose for which the custom measure was developed.
      1. Examples: PROMIS Sleep Disturbance CF v1.0 ZZ1234; Neuro-QoL Custom Profile PROJECTX
  2. Specific population and use case for which the custom form was designed.
  3. Item bank, scale, or pool that was the source for items included in the custom form (e.g., Neuro-QoL Pediatric Bank v1.0 – Pediatric Stigma).
  4. Item IDs for the custom short form (e.g., 2220R2r, 3150bR2r). Users are not permitted to share item text or copies of the custom form.
  5. References to any relevant publications using the custom form.
  6. The name of the study team/user that created the custom form.

Create a New Neuro-QoL Measure

Investigators can create new measures which can be adopted into Neuro-QoL and disseminated through HealthMeasures. To do this, there are several requirements. First, the new measure must fill an important measurement gap. Before beginning work, we strongly recommend contacting to evaluate if a new measure has the potential to be adopted into Neuro-QoL. Second, the same or similar methods for measure creation should be utilized. See Neuro-QoL Measures Development & Research for more information. Finally, measures must be reviewed by HealthMeasures. This review ensures all Neuro-QoL measures followed Neuro-QoL standards including measure names, scoring, and interpretation. There are costs for the review and implementing measures in HealthMeasures administration platforms. See Pricing for Services for more information>>

Modify or Adapt a Neuro-QoL Measure

Sometimes a Neuro-QoL user wants to make a modification to a Neuro-QoL item such as changing the time frame, altering the response options, or adding an instruction to consider only one health issue when responding. In general, our philosophy is that measures can be improved and we welcome others to make and test improvements. We believe measurement problems and improvements are based on data, not expert opinion alone. Modifications may alter how an item performs and invalidate scoring.

Modifications for Your Own Research/Clinical Practice
Our guidance for modifications varies by the intended context of use. If you are modifying a measure for your own research or clinical practice, proceed with caution. Many modifications have already been tested and found to perform poorly. However, in most cases we do not have data to know how that modification will alter item performance. For this reason, we strongly encourage testing modifications before use. We do not prevent researchers or clinicians from making modifications within their own work. We do require modifications to be described when presenting or publishing results.  See Publishing Results>>

Modifications for Adoption into Neuro-QoL
If you are modifying a measure that you intend to publish as a Neuro-QoL measure and/or have your measure adopted into Neuro-QoL, you must request permission from at the outset of your research. Measures must follow Neuro-QoL scientific standards and undergo review by the HealthMeasures scientific team. There are costs for the review and implementing measures in HealthMeasures administration platforms. See Pricing for Services for more information>>

Guidance for Modifications
For more information about what modifications are fine, what should be studied, and what is discouraged, please view our guidance. Learn more>>

Create a New Translation of a Neuro-QoL Measure

All translations of Neuro-QoL measures are coordinated by the Department of Medical Social Sciences at Northwestern University Feinberg School of Medicine. If you are interested in creating or altering a translated Neuro-QoL measure, contact Learn more at Available Translations>>


Last updated on 3/27/2023