A patient-centered gout information value chain: a scoping review.

OBJECTIVE

To examine and identify the scope of research addressing health information requirements for gout patients using value chain analysis.

METHODS

Five electronic databases (PubMed, CINAHL, ERIC, PsycINFO, Embase, and Scopus) and grey literature (WorldCat) were searched in accordance with a published protocol. Only English language articles were included, with no limitations for date of publication. The findings of the 33 studies included for final analysis were subsequently divided into 6 groups according to the stages of the care delivery value chain their research most closely pertained to: screening/preventing (n = 2), diagnosing (n = 1), preparing (n = 7), intervening (n = 11), recovering/rehabilitating (n = 5), and monitoring/managing (n = 13).

RESULTS

The 33 studies focused on one or more of the following information phenotypes: 1) pathophysiology; 2) medical treatment; and 3) nonpharmaceutical interventions. Long term treatment adherence was a popular topic amongst studies that focused on gout patient education.

CONCLUSION

Based on the identified studies, gout patients are being told what to do, but are not being adequately educated regarding why recommended interventions are important or how to accomplish them.

PRACTICE IMPLICATIONS

This review provides a foundation to develop and evaluate personalized education materials using value chain analysis.