Sarcoidosis

Sarcoidosis is a chronic, multisystem inflammatory disorder of unknown etiology that is characterized by the presence of noncaseating epithelioid granulomas and primarily affects the lungs in over 90% of cases but also affects the skin, eye, heart and central nervous system.

Because of the lack of a cure for sarcoidosis, treatment for patients with the disease remains problematic. Treatment is often undertaken to resolve symptoms or prevent disease progression to organ failure. Most recommendations are currently based on anecdotal reports or small case series. Medications for systemic organ involvement can often control the disease, but some patients may fail to respond to treatment and additional targeted therapy is required. Approximately 50% of sarcoidosis patients require systemic steroid therapy; however, up to 20% of treated patients continue to exhibit a persistent granulomatous inflammatory process, with progression to tissue remodeling and fibrosis.

In addition to organ-specific symptoms, many patients experience nonspecific symptoms, such as fatigue, psychological distress, and pain issues that are disabling—particularly when they become chronic and have a considerable impact on quality of life.

Pre-Meeting Survey & Group Training

In collaboration with a professional facilitator and Xentria, FSR created a pre-meeting survey that allowed the facilitator and Xentria to identify trends and questions that would shape the live focus group. FSR convened all patient participants for a virtual training the week before the meeting allowing the participants to become comfortable with the facilitator and the types of questions they may be asked. In collaboration with the professional facilitator and Xentria, FSR created a facilitator’s guide for the live 90-minute discussion in response to the pre-survey questions and Xentria’s input on the topics of most significant importance.

Post-Focus Group Survey

Overall, the participants enjoyed taking part in the focus group and found it personally beneficial. Participants found it helpful to hear about others’ experiences and found the in-depth discussion useful in providing a deeper understanding of the burden of disease and the everyday experience of others living with sarcoidosis. Participants were hopeful that this information would be useful in helping others and were grateful for the opportunity to share with each other and Xentria in the pursuit of progress towards better treatment options.

The Role of Patient Organizations

The Foundation for Sarcoidosis Research (FSR) worked with Xentria to identify goals, topics of interest and characteristics of patient participants. Preparation and engagement with patient participants—both the pre-work and focus-group facilitation—were guided by methods developed and used by Living Proof Advocacy, particularly The Whole Advocate™ approach to support and the Five Qualities of a Well-Told Advocacy Story.¹

The Whole Advocate™ approach, similar to patient-centric engagement efforts, places at the center of its model the person who is sharing their lived experiences in order to advocate for change—not as a passive contributor but as an active agent who warrants support and respect.

The Five Qualities of a Well-Told Advocacy Story are designed to help persons sharing lived experience ensure their participation is intentional and has the effect both desired by the individual and required by the context. The Five Qualities—Focus, Pointing to the Positive, Craft, Framing and Practice—help ground individuals in best practices that enable them to share experiences in a way that truly educates, motivates or activates.

In preparation and facilitation of this focus group, FSR worked closely with a professional facilitator, John Capecci. John Capecci, Ph.D. is the Senior Coach and Cofounder, Living Proof Advocacy, Inc. (LPA) a communication skills training and consulting company that helps organizations and individuals tap the persuasive power of lived experience to create change.