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

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 CDEs 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.

Feasibility of Combining Common Data Elements Across Studies to Test a Hypothesis

“…Through a consensus process, the CDE Working Group reviewed, agreed on, and developed a set of CDEs to be commonly collected in all symptom studies–sleep, fatigue, pain, and cognitive or affect–regardless of diagnosis (Redeker et al, 2015), and to evaluate self-management of these symptoms (Moore et al, 2016)…”

2017 National Standards for Diabetes Self-Management Education and Support

“…A variety of assessment modalities, including online assessments via consumer portals and EHR, tablet computers that integrate with EHR, text messaging, web-based tools, automated telephone follow-up, and remote monitoring tools can be used (77,149-152). Selecting validated tools, used for assessment and ongoing evaluation, will generate more evidence to support DSMES (153). Although not an exhaustive list or applicable to all populations, examples of assessment tools can be found in the Standards' glossary ( Table 1).…”

Pilot study protocol of a mHealth self‐management intervention for family members of pediatric transplant recipients

“…These questions were developed for this study. They are modeled after Lorig et al and the PROMIS database (patient‐reported outcomes measurement information system) and adapted for this population (Lorig & Holman, 2003; Moore et al, 2016; PROMIS, 2016). The two family member participants respond independently using a scale of 0–10 where a score of zero represents being not at all confident and a score of 10 represents being extremely confident.…”