Recommendations of Common Data Elements to Advance the Science of Self-Management of Chronic Conditions

• Type of Material: Article
• Authors: Shirley M. Moore, Case Western Reserve University; Rachel Schiffman, University of Wisconsin-Milwaukee; Drenna Waldrop-Valverde, Emory University; Nancy S. Redeker, Yale University; Donna Jo McCloskey, National Institutes of Health; Miyong T. Kim, University of Texas Austin; Margaret M. Heitkemper, University of Washington; Barbara J. Guthrie, Northwestern University; Susan G. Dorsey, University of Maryland Baltimore; Sharron L. Docherty, Duke University; Debra Barton, University of Michigan; Donald E. Bailey, Duke University; Joan K. Austin, National Institutes of Health; Patricia Grady, National Institutes of Health
• Language: English
• Date: 2016-09
• Publisher: Wiley: 12 months
• Publication Version: Author Accepted Manuscript (After Peer Review)
• Copyright Statement: Copyright 2016 Sigma Theta Tau International
• Final Published Version (URL): http://dx.doi.org/10.1111/jnu.12233
• Title of Journal or Parent Work: Journal of Nursing Scholarship
• ISSN: 1527-6546
• Volume: 48
• Issue: 5
• Start Page: 437
• End Page: 447
• Grant/Funding Information: This work was supported through the following grants: P20NR015339; P30NR015326; P20NR014126; P20NRO15320; P30NR014129; P30NR011396; and 1P30NR014139.
• Keywords: PATIENT ACTIVATION MEASURE; DISEASE; MECHANISMS; RANDOMIZED-TRIAL; research data harmonization; Life Sciences & Biomedicine; CARE; INDIVIDUALS; FAILURE; OUTCOMES; Science & Technology; EDUCATION; Common data elements; self-management; HEALTH; Nursing
• Research Categories: Health Sciences, Nursing

Abstract

Purpose: Common data elements (CDEs) are increasingly being used by researchers to promote data sharing across studies. The purposes of this article are to (a) describe the theoretical, conceptual, and definition issues in the development of a set of C DEs for research addressing self-management of chronic conditions; (b) propose an initial set of CDEs and their measures to advance the science of self-management; and (c) recommend implications for future research and dissemination. Design and Methods: Between July 2014 and December 2015 the directors of the National Institute of Nursing Research (NINR)-funded P20 and P30 centers of excellence and NINR staff met in a series of telephone calls and a face-to-face NINR-sponsored meeting to select a set of recommended CDEs to be used in self-management research. A list of potential CDEs was developed from examination of common constructs in current self-management frameworks, as well as identification of variables frequently used in studies conducted in the centers of excellence. Findings: The recommended CDEs include measures of three self-management processes: activation, self-regulation, and self-efficacy for managing chronic conditions, and one measure of a self-management outcome, global health. Conclusions: The self-management of chronic conditions, which encompasses a considerable number of processes, behaviors, and outcomes across a broad range of chronic conditions, presents several challenges in the identification of a parsimonious set of CDEs. This initial list of recommended CDEs for use in self-management research is provisional in that it is expected that over time it will be refined. Comment and recommended revisions are sought from the research and practice communities. Clinical Relevance: The use of CDEs can facilitate generalizability of research findings across diverse population and interventions.