Impact of online health information-seeking behavior on shared decision-making in patients with systemic lupus erythematosus: the TRUMP2-SLE project

Abstract

Objective: Providing appropriate health information to patients with systemic lupus erythematosus (SLE) is advantageous in the treatment decision-making process. We aimed to investigate how online health information-seeking behavior affects shared decision-making (SDM) in patients with SLE. Methods: This cross-sectional study included 464 patients with SLE from five institutions. The main exposure was time spent on the Internet per day, which was divided into four categories (none, <1 h, 1-<2 h, and ≥2 h). Participants categorized their preferred first source of health information as physicians, the Internet, or other media. The outcome was the degree of SDM measured via the 9-item Shared Decision-Making Questionnaire (SDM-Q-9). A general linear model was applied. Results: Compared with no Internet use, longer internet use was associated with a higher SDM-Q-9 score: <1 h, 6.9 points (95% confidence interval [CI] 0.32 to 13.6) and ≥2 h, 8.75 points, (95% CI 0.61 to 16.9). The SDM-Q-9 did not differ between those who chose physicians and those who chose the Internet as their preferred first source of health information (-2.1 points [95% CI -6.7 to 2.6]). Those who chose other media had significantly lower SDM-Q-9 scores than those who chose physicians (-7.6 points [95% CI -13.2 to -1.9]). Conclusions: The present study suggests that SDM between physicians and patients is positively (rather than adversely) associated with online information-seeking behavior, with no negative influence associated with accessing the Internet prior to visits to a rheumatologist. Rheumatologists may need to introduce their patients to websites offering high-quality health information to establish a productive physician-patient relationship for SDM.

Competing Interest Statement

NK is a member of the Committee on Clinical Research, Japan College of Rheumatology, and has received grants from the Japan Society for the Promotion of Science, consulting fees from GlaxoSmithKline K.K., and payments for speaking and educational events from Chugai Pharmaceutical Co. Ltd., Sanofi K.K., Mitsubishi Tanabe Pharma Corporation, and Japan College of Rheumatology. K. Sada has received a research grant from Pfizer Inc. and a payment for speaking and educational events from GlaxoSmithKline K.K. The remaining authors declare no competing interests.

Funding Statement

This study was supported by JSPS KAKENHI (Grant Number: JP 19KT0021). The funder had no role in the study design, analyses, interpretation of the data, writing of the manuscript, or decision to submit the manuscript for publication.

Author Declarations

I confirm all relevant ethical guidelines have been followed, and any necessary IRB and/or ethics committee approvals have been obtained.

Yes

The details of the IRB/oversight body that provided approval or exemption for the research described are given below:

This study was approved by the ethics committee of Shinshu University Hospital (approval number 5433).

I confirm that all necessary patient/participant consent has been obtained and the appropriate institutional forms have been archived, and that any patient/participant/sample identifiers included were not known to anyone (e.g., hospital staff, patients or participants themselves) outside the research group so cannot be used to identify individuals.

Yes

I understand that all clinical trials and any other prospective interventional studies must be registered with an ICMJE-approved registry, such as ClinicalTrials.gov. I confirm that any such study reported in the manuscript has been registered and the trial registration ID is provided (note: if posting a prospective study registered retrospectively, please provide a statement in the trial ID field explaining why the study was not registered in advance).

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I have followed all appropriate research reporting guidelines and uploaded the relevant EQUATOR Network research reporting checklist(s) and other pertinent material as supplementary files, if applicable.

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Data Availability

All data produced in the present study are available upon reasonable request to the authors.

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