Exploring the implementation of patient-reported outcome measures in cancer care: need for more real-world evidence results in the peer reviewed literature

Milena Anatchkova; Sarah M Donelson; Anne M Skalicky; Colleen A McHorney; Dayo Jagun; Jennifer Whiteley

doi:10.1186/s41687-018-0091-0

Exploring the implementation of patient-reported outcome measures in cancer care: need for more real-world evidence results in the peer reviewed literature

J Patient Rep Outcomes. 2018 Dec 27;2(1):64. doi: 10.1186/s41687-018-0091-0.

Authors

Milena Anatchkova¹, Sarah M Donelson², Anne M Skalicky³, Colleen A McHorney³, Dayo Jagun⁴, Jennifer Whiteley⁵

Affiliations

¹ Patient-Centered Research, Evidera, Bethesda, MD, USA. milena.anatchkova@evidera.com.
² , San Francisco, California, USA.
³ Patient-Centered Research, Evidera, Bethesda, MD, USA.
⁴ , Tampa, Florida, USA.
⁵ Genentech Inc., South San Francisco, CA, USA.

Abstract

Background: To explore the existing evidence of the real-world implementation of patient-reported outcomes (PROs) in oncology clinical practice and address two aims: (1) summarize available evidence of PRO use in clinical practice using a framework based on the International Society for Quality of Life Research (ISOQOL) PRO Implementation Guide; and (2) describe reports of real-world, standardized PRO administration in oncology conducted outside of scope of a research study.

Methods: A Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) protocol was developed to guide the systematic literature review (SLR) that was conducted in MEDLINE and Embase databases. A two step search strategy was implemented including two searches based on previously completed reviews. Studies published from 2006 to 2017 were synthesized using a framework based on the ISOQOL PRO Implementation Guide.

Results: After screening 4427 abstracts, 36 studies met the eligibility criteria. Most elements of the ISOQOL PRO Implementation Guide were followed. Two notable exceptions were found: 1) providing PRO score interpretation guidelines (39% of studies); and 2) providing patient-management guidance for addressing issues identified by PROs (25% of studies). Of the 22 studies with an intervention component, 19 (86%) reported intervention effects on study outcomes. The European Organisation for Research and Treatment of Cancer Quality-of-Life Questionnaire-Core 30 (EORTC QLQ-C30) was the most commonly used PRO (n = 10, 28%); use of 38 other PRO measures was also reported. Only three studies (8%) reported real-world PRO implementation.

Conclusion: Reports of real-world PRO implementation are limited. Reports from studies conducted in clinical settings suggest gaps in information on PRO score interpretation and the use of PRO results to inform patient management. Before the promise of practice-based PRO assessment in oncology can be truly realized, investigators need to advance the state-of-the-art of real-time PRO score interpretation as well as developing guidance on how to use PRO insights to drive clinically-meaningful patient-management strategies.

Keywords: Cancer; Clinical practice; Oncology; PRO implementation; Patient-centered care; Patient-reported outcomes; Quality of care.

Publication types

Review