Chronic condition self-management is better enabled by embedding behavior change into custom solutions
Customer Success Story
How the Lupus Foundation of America is driving adoption of self-management strategies to improve quality of life for people with lupus.
Lupus is an autoimmune disease affecting more than 1.5 million Americans, and at least 5 million people worldwide. People with lupus can experience significant symptoms, such as pain, extreme fatigue, hair loss, cognitive issues, and physical impairments that affect every facet of their lives. Many suffer from cardiovascular disease, strokes, disfiguring rashes, and painful joints. For others, there may be no visible symptoms. Of course, many people also report the adverse emotional impact associated with their lupus as the most difficult part of coping with their disease.
There is no cure for lupus. Living the best possible life is highly dependent on self-management—those things done on a day-to-day basis by individuals to manage their condition and pursue activities important to them. Surprisingly, despite the importance of self-management in the treatment of lupus, there were no comprehensive, evidence-based self-management programs available specifically targeting this disease.
“ProChange is a true partner in our work. Their commitment to the success of the project matches our own.”
– Melissa French, MS, Content Director, Lupus Foundation of America
Recognizing this significant gap, the Lupus Foundation of America, Inc. (LFA) was tasked with developing an online self-management program for newly diagnosed individuals that could drive increased adoption of improved self-management practices through behavior change. The LFA is the largest non-profit voluntary health agency dedicated to improving the quality of life for all people affected by lupus through programs of research, education, support, and advocacy. They were seeking a partner with demonstrated expertise in employing a participatory design to develop an evidence-based lupus self-management program grounded in behavior change theory.
ProChange’s expertise in the science of behavior change and experience developing and testing evidence-based solutions that drive behavior change across a range of health behaviors and populations positioned them as the right partner for the LFA. Rooting our programs in behavior change theory, as well as employing a user-centered approach to the development of our programs, has resulted in a long history of success in changing a wide range of health behaviors, including chronic condition management. We implemented this time-tested approach in developing a custom solution for the LFA.
ProChange began by conducting extensive formative work to determine the needs of individuals with lupus through a series of activities. These included:
- A landscape analysis and systematic review of the existing literature.
- In-depth interviews with lupus subject matter experts and individuals with lupus.
The aims of this formative phase were to identify strengths and weaknesses of existing programs, classify the top needs of individuals with lupus, and determine the best self-management strategies to meet those needs. Given that lupus disproportionately impacts Black, Hispanic, and Asian people, a key objective of the formative research was to ensure that the solution was appropriate for diverse end users.
“Thank you for being such AMAZING partners to work with. I have loved the spirit of positivity, collaboration, and resourcefulness you bring to every meeting and it has taught me so much about what it means to be a good partner. Thank you. If, in the future, I am in a position to develop another program, ProChange will be the first call I make!”
– Sarah Gilman, Owner & Principal Consultant, Wayfinder Health Strategies; Consultant to LFA
ProChange’s technical and content development teams incorporated the insights from the formative research into a prototype of the program in a series of sprints using an agile software development process. As program components were developed, they were iteratively refined based on feedback from multiple key stakeholders, including the LFA, a large federal agency, lupus subject matter experts, and a panel of individuals with lupus. Once the first iteration of this program was complete, the program underwent rigorous internal testing, as well as usability testing by individuals with lupus. End-user feedback from usability testing was then used to make final refinements to the program prior to releasing the final product which was named “Strategies to Embrace Living with Lupus Fearlessly” or “SELF.”
After the solution was developed, ProChange collaborated with the LFA to conduct a pilot with lupus patients in three academic medical centers to assess the feasibility, acceptability, and preliminary efficacy of the self-management program. Both quantitative and qualitative data collected during this pilot were then used to inform further enhancements to the program, resulting in a further optimized solution that was deployed nationally by the LFA.
ProChange also collaborated closely with the LFA on the promotional materials and campaigns for SELF, leveraging principles from behavior change science to ensure messaging would appeal to a broad audience.
The pilot test exceeded recruitment goals and supported the impact of SELF. Data on patient-reported outcomes revealed that SELF improved fatigue—a hallmark lupus symptom—and bolstered patient-doctor communication. In addition, SELF promoted the adoption and mastery of 16 lupus self-management skills. For example, SELF improved medication adherence, shared decision making, and letting family and other advocates know what they could do to be helpful.
Among those who completed their 90-day follow-up session, up to 97% endorsed that they agreed/strongly agreed with the following statements about SELF:
- The program was easy to use.
- The personal feedback was easy to understand.
- I liked the way the program looked.
- The program gave me new things to think about.
- The program could help me make some positive changes.
- I would be willing to use the program again.
Both quantitative and qualitative data were analyzed and synthesized to inform further enhancements made to the program prior to its national launch. Within the first two months after the national launch of SELF, more than 1,200 individuals with lupus have enrolled, doubling LFA’s annual goal.