Make New PROMIS Measures
New and adapted PROMIS measures can be created.
Create a Custom Short Form
Any subset of items from a single PROMIS 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. https://doi.org/10.2147/PROM.S7585)
- 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 (2012) 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. https://doi.org/10.1007/s11136-011-0011-8
Share Your Custom Short Form
HealthMeasures users can disseminate information about custom short forms in the HealthMeasures Forum. Measure information should include:
- Name of the custom form (CF). The name should include (in the following order):
- Measurement system(s) from which the items were selected (e.g., PROMIS).
- Domain/bank name from which the items were selected (e.g., Physical Function); this element can be omitted if multiple domains are represented (i.e., the custom form is a custom profile).
- CF (if one domain) or Custom Profile (if multiple domains).
- Version number of bank from which items were selected; omit if custom profile.
- Protocol number or project name that identifies the purpose for which the custom measure was developed.
- Examples: PROMIS Sleep Disturbance CF v1.0 ZZ1234; Neuro-QoL Custom Profile PROJECTX
- Specific population and use case for which the custom form was designed.
- Item bank, scale, or pool that was the source for items included in the custom form (e.g., PROMIS Pediatric Bank v2.0 – Anxiety).
- 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.
- References to any relevant publications using the custom form.
- The name of the study team/user that created the custom form.
Create a New PROMIS Measure
Investigators can create new measures which can be adopted into PROMIS and disseminated through HealthMeasures. To do this, there are several requirements.
- The new measure must fill an important measurement gap. Before beginning work, we strongly recommend contacting help@HealthMeasures.net to evaluate if a new measure has the potential to be adopted into PROMIS.
- Measures must follow the Instrument Development and Validation Scientific Standards. They are summarized in this downloadable presentation.
- Measures must be reviewed by HealthMeasures. This review ensures all PROMIS measures followed PROMIS standards including qualitative and quantitative methods, item response theory scoring, and are disease agnostic. There are costs for the review and implementing measures in HealthMeasures administration platforms. The two stage review process starts with an assessment for fit, followed by a comprehensive review of the evidence of use of PROMIS measure development methods.
- New measures that are in review by HealthMeasures may not use "PROMIS' in the measure name until the measures have been adopted. Investigators can, however,
a. Describe that the measures are submitted for adoption by PROMIS.
b. State once what the likely name of the measure will be including the word “PROMIS” in the name.
c. State that the PROMIS methodology was followed, with appropriate references.
d. State that the measures were developed “for PROMIS,” provided HealthMeasures was consulted.
Create a New Translation of a PROMIS Measure
All translations of PROMIS 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 PROMIS measure, contact translations@HealthMeasures.net. Learn more at Available Translations>>
Sometimes a PROMIS user wants to make a modification to a PROMIS 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 PROMIS
If you are modifying a measure that you intend to publish as a PROMIS measure and/or have your measure adopted into PROMIS, you must request permission from help@HealthMeasures.net at the outset of your research. Measures must follow PROMIS 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>>
• A modified PROMIS item cannot be treated as a valid item unless rather extensive research demonstrates its psychometric equivalence to the original item.
• We do not recommend using the HealthMeasures Scoring Service or item parameters that are applied to the original (source) items unless and until data are provided to demonstrate the validity of doing so.
• Modified items require all necessary licenses and permission to translate.
Guidance for Modifications to HealthMeasures Items
For more information about what modifications are fine, what should be studied, and what is discouraged, please view our Guidance on Modifications to HealthMeasures Items. It includes specific examples of modifications likely and unlikely to be adopted into PROMIS. Learn more>>
Last updated on 11/15/2023