Several initiatives and resources support the appropriate selection and adaptation of PROMs:

Core Outcome Sets (COS):
Some clinical fields have developed COS to recommend relevant patient-reported outcomes (PROs). These rarely specify exact PROMs but are increasingly supported by selection frameworks (e.g. Prinsen et al., 2016).

PROQOLID:
A public-private sector initiative offering an online database of available PRO instruments.

COMET Initiative:
The Core Outcome Measures in Effectiveness Trials project identifies and promotes core outcomes across medical research, including PROMs (COMET, 2018).

OMERACT Framework:
Originally developed in rheumatology, OMERACT Filter 2.0, updated to version 2.1 (Boers et al., 2019), outlines:

  • Core domain sets (what should be measured)
  • Core measurement sets (how it should be measured, i.e. which PROM to use)

Although developed in rheumatology, the framework is generic and adaptable to other fields.

Emerging Tools & Innovations

A new generation of PROMs is being designed for routine, semi-structured monitoring of patient health. These tools are:

  • Brief and easy-to-use
  • Able to automatically track physio-emotional sensitivity
  • Designed for frequent and user-friendly feedback collection

PROMIS (Patient-Reported Outcomes Measurement Information System) is a key initiative in this space. Developed as part of the National Institute of Health's (NIH) Roadmap Initiative, it leverages:

…to build precise, efficient, and validated PROM tools.

🔗 A general overview of available PROMs is also available on Wikipedia under Patient-reported outcome – Examples.

📦 Box 1: Helpful tools for finding and assessing PRO measures 

🔗Prinsen, C.A.C., Vohra, S., Rose, M.R. et al. How to select outcome measurement instruments for outcomes included in a “Core Outcome Set” – a practical guideline. Trials 17, 449 (2016). https://doi.org/10.1186/s13063-016-1555-2

🔗Patient-Reported Outcome and Quality of Life Instruments Database (PROQOLID) (only available to subscribers) –  http://www.proqolid.org/search2/alphabetical_list

🔗The Core Outcome Measures in Effectiveness Trials (COMET) Initiative –   http://www.comet-initiative.org/

🔗COSMIN guideline for systematic reviews of patient-reported outcome measures COSMIN guideline for systematic reviews of patient-reported outcome measures - PMC (nih.gov)

🔗OMERACT Filter 2.1: Elaboration of the Conceptual Framework for Outcome Measurement in Health Intervention Studies, Maarten Boers, Dorcas E. Beaton, Beverley J. Shea, Lara J. Maxwell, Susan J. Bartlett, Clifton O. Bingham, Philip G. Conaghan, Maria Antonietta D’Agostino, Maarten P. de Wit, Laure Gossec, Lyn March, Lee S. Simon, Jasvinder A. Singh, Vibeke Strand, George A. Wells, Peter Tugwell, The Journal of Rheumatology Aug 2019, 46 (8) 1021–1027; DOI: 10.3899/jrheum.181096,  https://www.jrheum.org/content/jrheum/46/8/1021.full.pdf 

🔗Patient-Reported Outcomes Measurement Information System (PROMIS):   https://www.healthmeasures.net/explore-measurement-systems/promis?AspxAutoDetectCookieSup=

🔗Wikipedia Patient-reported outcome /Examples: Digital object identifier - Wikipedia

[1] Erik Cambria; Tim Benson; Chris Eckl; Amir Hussain (2012). "Sentic PROMs: Application of Sentic Computing to the Development of a Novel Unified Framework for Measuring Health-Care Quality". Expert Systems with Applications, Elsevier. doi:10.1016/j.eswa.2012.02.120

[2] Computerized adaptive testing (CAT): a form of computer-based test that adapts to the examinee's ability level. It is a form of computer-administered test in which the next item or set of items selected to be administered depends on the correctness of the test taker's responses to the most recent items administered.