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

Authors


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 (κ = 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.

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