Stakeholder Convenings - Empowering Women with Lupus Nephritis to Share In Their Treatment Decisions

Background: Systemic lupus erythematosus (SLE) is a chronic disease primarily affecting young women that can eventually lead to kidney failure, and death, if not addressed. According to the Lupus Foundation of America, approximately 16,000 people, primarily women of childbearing age of 15-44, are diagnosed with lupus annually. The overwhelming majority are from racial/ethnic minority backgrounds who experience a lower socioeconomic status; many have limited access to health care. Effective treatment options that involve immunosuppressive medications are often complex and carry risks of infertility, teratogenicity, and serious infections. Patients must make difficult decisions that require weighing the risks and benefits of the various treatments available. 

 

Proposed Solution to the Problem: Decision aids often play an important role in empowering the patient to participate in the decision-making process. They can support a shared evaluation with their physician that is consistent with the patients’ values. Patient participation can improve outcomes, including medical adherence, which among racial/ ethnic groups is statistically lower and results in poorer overall outcomes. The PCORI-funded research project by the University of Alabama, under the direction of project lead Jasvinder Singh, MD, MPH, produced the first and only decision tool that provides individualized, culturally tailored, computerized assistance for medication decision making for patients, with a specific focus on populations with limited literacy and limited health literacy, including racial/ethnic minorities. This online decision aid is a valuable resource for both those seeking treatment and clinicians seeking a more effective method of communication beyond the standard pamphlet, which is the most common form of treatment and choice communication. 

 

Objectives: Having a clear understanding of what options are available with clear patient–provider communication and a patient’s comprehensive understanding and participation in the decision-making process is critical to assuring patients’ fidelity to the long-term treatment. The objective is to clearly demonstrate, in culturally appropriate language, the usage of the tool to underserved lupus patients, including those in rural areas, reducing the fear of biologics/immunotherapies and the attendant risks. Communicating the benefits of tool adaptation to clinicians who serve these patients will also be addressed.

 

Activities: AARDA is proposing two webinars, one for patient stakeholders and one for the clinical/ professional stakeholders, to be designed in concert with Singh and the UAB team. Each of the events will be recorded and available for future dissemination online as well as all of the training materials.

 

- An increase in overall patient satisfaction, and subsequently higher adaptation, with treatment decisions 

- Lessened anxiety as women participate in their own decision treatment options 

- Efficacy of tool adaptation in clinical practices leading to efficiencies, increasing positive long-range health outcomes overall 

- Encourage and support adaptation of the decision tool in practice settings 

- Assist with modifications of practice patterns and disparities in care in economically disenfranchised areas

- Both webinars and the training materials will be archived, and the link distributed for future use.

 

Patient and Stakeholder Engagement Plan: AARDA will design a multi-stage outreach via social media as well as through the advisory team of stakeholders, which includes both patients and stakeholder organizations who would have interest in the tool. The campaign(s) will be designed specifically to target African-American, Hispanic, and LGBTQ women, both inner-city urban and rural, using proven methods of outreach and through combining resources with each of the partners. Outreach to each group will entail culturally appropriate, targeted messaging to each demographic. AARDA will also engage clinical stakeholders through their board members as well as through the National Coalition of Autoimmune Patient Groups (NCAPG), 40+ organizations that represent an array of autoimmune and related diseases including the Lupus Foundation of America and the Arthritis Foundation.

 

Project Collaborators: University of Alabama