Core Domains for a Person-Focused Outcome Measurement System in Cancer (PROMS-Cancer Core) for Routine Care: A Scoping Review and Canadian Delphi Consensus

• Published in: Value in health 2013-01, Vol.16 (1), p.76-87
• Main Authors: Howell, Doris, PhD, Fitch, Margaret, PhD, Bakker, Debra, PhD, Green, Esther, MSc(T), Sussman, Jonathan, MD, Mayo, Samantha, MSN, Mohammed, Shan, MSN, Lee, Charlotte, PhD, Doran, Diane, PhD
• Format: Article
• Language: English
• Subjects: Biological and medical sciences; Canada; Cancer; Citations; Classification; Consensus; Data Collection - methods; Data Collection - standards; Decision Making; Delivery of Health Care - standards; Delphi Technique; Feasibility Studies; health; Humans; Interdisciplinary Communication; Internal Medicine; Measurement; Medical sciences; Miscellaneous; Multiple tumors. Solid tumors. Tumors in childhood (general aspects); Neoplasms - pathology; Neoplasms - therapy; Outcome Assessment (Health Care) - methods; patient-reported outcomes; Public health. Hygiene; Public health. Hygiene-occupational medicine; Quality of Health Care; scoping review; Selfreport; Survivors; Tumors
• ISSN: 1098-3015; 1524-4733
• DOI: 10.1016/j.jval.2012.10.017

Abstract Objectives The objectives of this scoping review study were 1) to identify core domains and dimensions for inclusion in a person-focused and self-reported outcome measurement system for cancer and 2) to reach consensus among key stakeholders including cancer survivors on the relevance, acceptability, and feasibility of a core outcome set for collection in routine clinical care. Methods Following a scoping review of the literature, a Rand Delphi consensus method was used to engage key interdisciplinary decision makers, clinicians, and cancer survivors in reaching consensus on a core patient-reported outcome domain taxonomy and outcome measures. Results Of the 21,900 citations identified in the scoping review, 1,503 citations were included in the full article review (380 conceptual articles, 461 psychometric evaluation articles, and 662 intervention studies) and subjected to data abstraction and mapping. Final consensus was reached on 20 domains, related subdimensions, and 45 self-report measures considered relevant and feasible for routine collection in cancer by the Delphi panel (PROMS-Cancer Core). Conclusions Standardization of patient-reported outcome data collection is key to assessing the impact of cancer and treatment on the person for population comparison and monitoring the quality of clinical care. The PROMS-Cancer Core taxonomy of domains and outcome measures can be used to guide the development of a patient-reported outcome information system for cancer.