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Searchable Library

The FACIT Measurement System is a compilation of over 100 distinct self-report questionnaires that assess a wide variety of symptoms, functional abilities, general perceptions of health and well-being, and other aspects of health-related quality of life.

These measures are comprised of over 700 unique items appropriate for use with adults aged 18 and over, and more than 130 items appropriate for children ages 8-18. Most FACIT items have demonstrated face and content validity, and were created with direct input from patients and expert clinicians. Many items have also been translated into nearly 80 languages (reaching over 100 countries) using a standardized, rigorous translation methodology and tested for comprehension by native speakers. All items in the FACIT Searchable library were created with direct input from patients and expert clinicians, and tested for comprehension by native speakers of the languages into which each item has been translated.

Until 2017, people used these items via static FACIT questionnaires in a fixed, validated format. Now, with the introduction of the FACIT Searchable Library, one can create a custom form using the site’s Build-a-PRO function and include only those FACIT items most relevant to one’s study or purpose. While doing so does not instantly “validate” the custom composition, it does create an opportunity to select specific items relevant to the research question at hand, using content valid items that have undergone careful translation into other languages. It also allows for the opportunity to pursue validation of the assembled set of questions using standard questionnaire validation practice.

Two recent trends have led us to provide this new approach:


One is the introduction of item response theory (IRT) into health measurement. One of the guiding principles of IRT measurement is the basic ‘fungibility’ of items measuring the same underlying concept, or domain. In an IRT-calibrated item bank, one can “pick-and choose” items from that bank, according to their content relevance in a given setting. The score obtained is generalizable to other studies or samples that may have used a different set of items from the same bank. Given this, the introduction of IRT into health measurement has led to the question of whether or not more classically-developed measurement systems such as FACIT could consider the value of customized individual item selection. Some FACIT items have become incorporated into or linked with national item banks such as PROMIS and Neuro-QoL, and these could indeed be scored on those national metrics. However, most FACIT items have not been incorporated or linked to existing IRT item banks and would therefore not be able to produce interpretable scores beyond the single item raw score, which is the starting point for most custom forms.

The second trend leading to this new approach has been increasing pressure from government and private sectors, including patient advocates, to ask only those questions that are directly relevant to the hypothesis of a given study or treatment comparison. This pressure has been growing for several years, culminating in the release of the National Cancer Institute’s Patient Reported Outcome Common Terminology Criteria for Adverse Events (PRO-CTCAE), which is a set of 124 items that query 78 symptom terms from the larger (clinician-rated) CTCAE v4.0. The FACIT Searchable Library covers all of the PRO-CTCAE major categories, maps to 55 of its 78 symptom terms, and addresses several other disease symptoms and treatment adverse events. Similar to how the PRO-CTCAE is deployed, any user could sample questions from the FACIT Searchable Library and evaluate, in descriptive fashion, how one treatment compared to another, on an item-by-item basis.

Below are five easy steps to build a custom assessment from the FACIT Searchable Library:

Step 1:

Educate yourself on the content of the item library. Search by Symptom, Function, General Perceptions, or Other. Or search by PRO-CTCAE category for comparison.


Step 2:

Evaluate the fit of item content to your research goal. Think in terms of item content, relevance, readability, and language availability.

Step 3:

Using the ‘Build-a-PRO’ function, create a custom form in English. Register to request permission for use.

Step 4:

Validate your new questionnaire with data you collect as to its scalability and responsiveness.

Step 5:

Publish your results and cite the FACIT Searchable Item Library as your source for items.

Some frequently asked questions:

How do I select items?

It is best to select items that have face validity with regard to the hypotheses or goals of your study. For example, if you are interested in pain, diarrhea, fatigue and nausea as disease- or treatment-related symptoms, select the questions in those symptom areas that best fit your patient population.

How do I score the items I selected?

Unless you use an existing, validated FACIT subscale or scale, or a set of IRT-calibrated items, do not score multi-item scales until you have conducted proper scaling analyses and validated the sum score using appropriate methods.

How do I use the items?

Use them for item-level comparisons across treatments, or within a treatment over time, to estimate emerging or dissipating symptoms or functional abilities. Consider proportion of cases responding over a certain pre-defined threshold as more easily interpreted than average scores of a group. Also consider adding in individual items to a validated questionnaire.

How do I validate the items I selected?

Validation is a process of accumulating evidence, more than an end goal. There are established methods for validating any newly-constructed scale. It is usually done by first establishing the factor structure of the item responses, and then comparing the scores on scales constructed from these factors to scores of similar questionnaires or other variables that convey similar meaning to what the summed set of questions is believe to measure (e.g., a brief fatigue scale, or a brief social function scale, etc.). The advantage of starting with the FACIT Searchable Library is the knowledge that all items were written with patient input and tested to ensure comprehension and ease of administration. Language translations were conducted with state-of-the-art methods to ensure cross-cultural relevance and semantic equivalence.

Standardized static, validated FACIT questionnaires range in length from 4-60 items. The practice of selecting an established, fixed FACIT questionnaire is still recommended for any investigator or clinician wishing to obtain a valid, interpretable score on the endpoints provided by that FACIT questionnaire. But custom form development may be useful for some researchers in need of a novel, functional method for more targeted assessment.

To explore the FACIT Searchable Library and its potential for custom generated forms using FACIT items, click below.

By clicking below, you will be directed to the FACIT Searchable Library section of our website. You can find more specific information about the FACIT Searchable Library in the FAQ’s section. We hope you find this latest iteration of our measurement system as interesting as we do.

Lauren Lent, DHA, MS
President, FACITtrans, LLC
Executive Director,
About Us
© 2020 
Benjamin Arnold, MA
Executive Director, FACITtrans, LLC
Jason Bredle, MFA