Selecting patient-reported outcome measures for a patient-facing technology

Objective: This article provides insight into our process and considerations for selecting patient-reported outcome measures (PROMs) designed for self-reporting symptoms and quality-of-life among breast cancer (BCA) patients undergoing oral anticancer agent treatment via a patient-facing technology (PFT) platform.
Methods: Following established guidelines, we conducted a thorough assessment of a specific set of PROMs, comparing their content to identify the most suitable options for studying BCA patients.
Results: We recommend utilizing the combination of EORTC QLQ-C30 þ EORTC QLQ-BR45 as the preferred instrument, especially when developing a dedicated “breast cancer-only” application.
Discussion: When developing and maintaining a dashboard for a PFT platform that includes multiple cancer types, it is important to consider the feasibility of interface design and workload. To achieve this, we recommend using PRO-CTCAEþPROMIS 10 GH for the PFT. Moreover, it is important to consider adding ad hoc items to complement the chosen PROM(s).
Conclusion: This article describes our efforts to identify PROMs for self-reported data while considering patient and developer burdens, providing guidance to PFT developers facing similar challenges in PROM selection.

Contributors

Priyank Raj, Youmin Cho, Yun Jiang, Yang Gong

Publication

Journal: JAMIA Open
Volume: 6
Issue: 4
Pages: -
Year: 2023
DOI: 10.1093/jamiaopen/ooad104

Further Study Information

Current Stage: Completed
Date:
Funding source(s): This project is funded under grant number R01HS027846 from the Agency for Healthcare Research and Quality (AHRQ), U.S. Department of Health and Human Services (HHS). Y.C. was partly supported by UTHealth Houston Cancer Prevention and Research Institute of Texas Innovation for Cancer Prevention Research Postdoctoral Fellowship (grant number RP210042).


Health Area

Disease Category: Cancer

Disease Name: Breast cancer

Target Population

Age Range: 18

Sex: Either, Female

Nature of Intervention: Drug

Stakeholders Involved

Study Type

- Recommendations for outcome measures (measurement/how)

Method(s)

- Other

To systematically select the most appropriate PROMs for our application, we adopted the 6 principles proposed by Luckett et al.7 The first principle states that the population characteristics should be carefully considered in PROM selection. The second is to use proximal PROs (such as symptoms) as the primary outcome and distal PROs (such as QoL) as the secondary outcome. The third and fourth principles state that PROMs should be identified primarily based on the content and structure of subscales within the PROM, and they should be supported by the adequacy of evidence for psychometric properties (such as reliability and validity) and track records of use in similar populations. It should be noted that
psychometric evidence must be documented for the ePRO mode of administration.8 The fifth principle discusses feasibility regarding respondent burden, cost, availability of translations, etc., while the final one states that ad hoc or supplementary items must be used minimally and can be appended at the end of the main PROMs and should be scored separately.

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