Decision Aids Improve Patient-Centered Care for People with Systemic Lupus Erythematosus

Decision aids (DA) are one of the many approaches used to help increase patient knowledge of their disease or illness and improve provider/patient communication, which can contribute to more favorable outcomes. In a recent study, a DA for systemic lupus erythematosus (SLE) was developed and implemented at 15 rheumatology clinics in the United States. Researchers found DAs are a valuable educational tool for people with SLE. 

A total of 24 interviews (23 female; 1 male) were conducted to help researchers understand how individuals engage with and respond to the DA developed for SLE. Assessment highlights include: 

• Communication is a significant issue in healthcare interactions – There is a need for effective communication that supports patients in understanding their diagnosis and knowing how to manage their symptoms.
• All patients felt the DA to be a useful educational tool – They highlighted the information was clear, logical and easy-to-use. Additionally, many patients noted it changed the way they interacted with their healthcare provider, noting they had more input to their treatment and additional questions to ask. 
• Comprehensive range of information is desired – Patients requested information on a variety of topics, such as lifestyle with nutrition and exercise, as well as flare, skin-related symptoms and mental health issues.
• Various Formats/Platforms of the DA Requested – Individuals have different preferences and stressed the importance of having various formats available to them, from website to smartphone and tablet. 
• Tailoring Would Increase Usage – Patients noted that if they were able to customize the tool, they would be more likely to regularly use the DA. For instance, there could be different DAs for those who were recently diagnosed versus people who are dealing with long-term symptoms. 
• Timing of DA Access – The majority of patients (70%) preferred viewing the DA ahead of their doctor’s appointment to help them come prepared for discussion and with any questions. Patients also suggested it could be helpful to receive the DA from their doctor as part of the pre-visit information. 

This study showcases that DAs are a valuable educational tool and underscores the importance of accessible and reliable information for people with SLE. The DA can play an important role in promoting patient engagement and shared decision making with their provider by empowering individuals with the information they need to make informed decisions about their health. Learn more about how to make the most of your next medical appointment.

Read the study