5. Examples of available tools


Examples of available tools

In some clinical fields core outcome sets are available to guide the use of appropriate PROs. Only rarely do these include specific guidance on which PROMs are preferable, although methods have been proposed for this (Prinsen et al 2016). One private/public sector partnership has produced an internet-based database that describes these tools (PROQOLID). Another initiative, the Core Outcome Measures in Effectiveness Trials (COMET), captures core outcomes, including PROMs (COMET 2018). Within the field of rheumatology, the Outcome Measures in Rheumatology (OMERACT) initiative has developed a conceptual framework known as OMERACT Filter 2.0 (2014) updated by version 2.1 to identify both core domain sets (what outcome should be measured) and core outcome measurement sets (how the outcome should be measured, i.e. which PROM to use) (Boers et al 2019). This is a generic framework and applicable to those developing core outcome sets outside the field of rheumatology.

A new generation of short and easy-to-use tools to monitor patient outcomes on a regular basis has been recently proposed.[1] These tools are quick, effective, and easy to understand, as they allow patients to evaluate their health status and experience in a semi-structured way and accordingly aggregate input data, while automatically tracking their physio-emotional sensitivity. As part of the National Institute of Health's Roadmap Initiative, the Patient-Reported Outcomes Measurement Information System (PROMIS) uses modern advances in psychometrics such as item response theory (IRT) and computerized adaptive testing (CAT) [2] to create highly reliable and validated measurement tools.  (CAT) [3] to create highly reliable and validated measurement tools.

A good overview of available PROMs can be found on wikipedia under Patient-reported outcome /Examples

Links to these tools are provided in Box 1.

 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: https://en.wikipedia.org/wiki/Patient-reported_outcome#cite_note-campro-8

[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.