Lupus Foundation of America encourages patient self-management
ATLANTA — The Lupus Foundation of America conducted two studies that aimed to help patients feel empowered and motivated to self-manage their disease, according to findings presented at ACR/ARP 2019.
Karin Tse, senior research coordinator at the Lupus Foundation of America, discussed Take Charge, an email-based program that offered patients education, tools and resources for disease self-management. “Based on the pilot, we found that email is the preferred delivery method for providing basic self-management messages because it is easy and convenient to use,” she said.
Patricia Davidson, vice president of education at the Lupus Foundation of America, talked about Strategies to Embrace Living with Lupus Fearlessly (SELF), an online program that allows users to select and dictate their own self-management agenda. “SELF is a unique, evidence-based, online program currently in development,” she said.
Take charge program
Take Charge was an 8-week program that was comprised of six weekly emails to 13 active, highly motivated participants who were involved with the Lupus Foundation of America. Content of the messages ranged from coping and communications to medication and symptom management.
Participants who opened at least one of the emails were surveyed to get feedback on the program. Some surveys were conducted via email, while others were conducted by phone.
Results showed that 69% of participants reported using at least one of the skills from the email set. The most commonly reported skill patients used was to prepare questions for their next doctor visit, which was employed by 46% of respondents.
“We conducted semi-structured, in-depth interviews with five users covering feasibility, comprehension, and appeal of the series,” Tse said. “We asked questions like, “How often do you want to receive emails? How many topics should the series cover? And, is the content appealing?””
Participants liked the brevity and simplicity of the series, and that the distribution of emails was an appropriate frequency to allow them to take action. Words like “empowering” and “motivating” were used to describe the content.
Importantly, phone respondents suggested that they could not tell that the emails were sent by lupus health educators. They felt this was key, particularly for newly diagnosed patients.
Another important response was that patients felt the series allowed them to connect to other patients with lupus.
“We are currently working on expanding the series to cover other topics and resources,” Tse said.
Shifting to SELF, the Foundation is currently in year 4 of 6 in a cooperative agreement with the CDC to develop the program, according to Davidson. “Our abstract at ACR this year highlights the approach and design of the SELF program,” she said.
The program has four behavioral goal areas, which include managing symptoms, stress and medications, and working within a health care team. Complementary components of the intervention include user assessments, a web portal with stage-matched activities and information, outbound text messages and emails to facilitate change and user engagement, and a reporting tool to assess how the program is being used and, ultimately, the outcomes patients experience.
“The program is based on the transtheoretical model of behavior change, which involves learning a healthy behavior through strategies and processes of change,” Davidson said. These processes begin with precontemplation and contemplation, move toward action, and then culminate with strategies for maintaining the action.
Participants begin the program by completing an assessment that focuses on the four key behavioral areas. They can then select one key behavior to focus on.
Once on the site, patients can use links to the Foundation’s National Resource Center on Lupus, Health Educators and LupusConnect message boards to get peer support in changing the behavior they have selected. They can then select whether they would like to be reminded via email, text message or other methods. “The program is designed to be accessed by smart phone, tablet or computer,” Davidson.
At minimum, the program is programmed to check up on patients every 2 weeks. At these time points, self-efficacy is evaluated, and patients are asked which behaviors they would like to focus on in upcoming weeks. Patients can then see a report that includes everything from lupus symptoms to self-management behaviors.
However, patients can also work at their own pace. “They can spend anywhere from 10 minutes a day to an hour a day, really any variation of time,” Davidson said.
Davidson reported that feedback from early users has been positive. The Foundation expects to finalize the program by late 2019, at which point pilot testing will begin. – by Rob Volansky
Davidson P. Abstract #2552. Design and development of an online intervention for lupus self-management based on the transtheoretical model of change.
Tse K. Abstract #168. Development and usability testing of Take Charge: An email series to increase knowledge of self-management skills in people with lupus. Presented at: American College of Rheumatology/Association of Rheumatology Professionals Annual Meeting; Nov. 9-13, 2019; Atlanta.
Disclosure: Davidson reports no relevant financial disclosures. Tse reports working for the Lupus Foundation of America.