Development and testing of a decision board to help clinicians present treatment options to lupus nephritis patients in Brazil

Abstract

Objective. Decision boards (DBs) help clinicians present options and include patients in the decision-making process. Our objective was to describe the steps to develop a DB to support shared decision making and assess reliability and construct validity. Methods. Systemic lupus erythematosus (SLE) scenarios were designed with the support of experts for disease severity, potential side effects, and outcomes. The DB comprised clinical information, 2 different treatment options (oral and intravenous), a description of the potential to control SLE within 5 years, and a list of potential side effects. Patients selected what they thought would be the 3 worst side effects and were informed of the probability that these would occur. We presented the DB to 172 patients who were asked to select and justify 1 treatment option. Reliability was assessed by kappa statistics. Construct validity was tested by an a priori hypothesis, analyzing the correlation between treatment decision and side effects selected, self-assessment score, educational level, and clinical aspects. Results. Patients favored oral medication, and side effects most often listed were iatrogenic cancer (44.2%), hair loss (21.6%), and severe infection (19.1%). Justifications were risk (48.9%), practicality (36.6%), effectiveness (12.2%), and risk-benefit tradeoff (2.3%). Reliability was similar to that found in the test phase ( ‫؍‬ 0.689, P < 0.001). Validity was tested by prediction of treatment decision based on the undesirable side effects selected (P ‫؍‬ 0.047). DB content was clear and easy for all patients to understand (P ‫؍‬ 0.05). Immunosuppressive drugs influenced patient decisions (P ‫؍‬ 0.006). Conclusion. DB is a reliable and valid instrument to assess SLE patient preference.

The Use of a Decision Board to Elicit Brazilian Patients' and Physicians' Preferences for Treatment: The Case of Lupus Nephritis

“…We still do not understand the factors that could influence these decisions [25]. Other studies that assess patient preferences suggest similar results, although none made use of a support tool.…”

“…This information may help us understand how medical knowledge and training can influence choices. This in turn can contribute to the design of education strategies that can help both patients and physicians communicate and deliberate while attempting to choose the best treatment for the patient [15][16][17][18][19][20][21][22][23][24][25].…”

“…The LN DB was used during individual interviews [25]. The content was presented and added to during the course of the interview ( Fig.…”

“…Risk/benefit trade-off justifications were those where patients, when choosing their preferred option, tried to consider all of the characteristics of both treatment options (i.e., their potential risks and effectiveness). Practicality justifications were those where the most important factor in choosing the treatment was how the drug was administered and how it would affect the interviewee's day-to-day activities [15][16][17][18][19][20][21][22][23][24][25]. The methodology used to categorize the justifications was presented in an article on developing and validating the Brazilian LN DB [25].…”

“…The DB is a simple tool that displays more than one therapeutic option to be valued and decided on [22][23][24][25]. It is low cost and can be easily updated.…”