“Patient perspective,” “patient-reported outcomes” and “shared decision making” are hot topics at the American College of Rheumatology (ACR) 2018 Annual Meeting in Chicago. In fact, many patients – including some of the Arthritis Foundation’s patient representatives – are attending the four-day event, which highlights rheumatology developments and draws medical professionals and researchers from around the world.
Donna Dernier, one of the Arthritis Foundation’s Patient Reps, reports that she ran into Hazel Breland, PhD, the incoming president of the Association of Rheumatology Health Professionals (AHRP), a division of the ACR. “She noticed my Patient Rep Sticker and stopped to say how glad she was to see patients involved with so many aspects of health care,” says Dernier.
Besides attending the conference, patients are getting involved in many ways. Four patients affiliated with the Arthritis Foundation exhibited posters during the Patient Perspectives Poster session on Sunday.
Lawrence Phillips presented a poster outlining his journey to lose a substantial amount of weight and keep it off, and the subsequent improvements he experienced in health and quality of life. Raquel Masco’s poster details her use of meditation to manage her pain/stiffness and better focus on life and work’s daily challenges. Shannan O’Hara-Levi’s poster explains how incorporating an integrative approach – including vitamin supplements, dietary restrictions and a walking regimen – into her treatment plan has empowered her and helped her cope with the unpredictability her of arthritis. And in Dr. Brandi Stevens’s poster, she shares her experience walking the fine line between being a pediatric rheumatologist and dealing with her own rheumatoid arthritis (RA).
Our Patient Reps also have been going to sessions and are telling us what they are learning. Here’s what some of them are reporting:
Gary Davenport attended a session called RA: Beyond Treat to Target. He reports, “As a lay person living with RA, quite a bit the information provided in this session was over my head. The main point I left with was the fact that research previously and currently taking place is moving forward daily to improve the health and lives of people who live with RA,” he says. “For anyone/everyone living with RA, this is music to our ears! Changes/improvements are coming that will improve the quality of life for millions of people.”
LaTosha Davis, who attended the same session, had a slightly different takeaway: “Within the next few years, rheumatology will have what Dr. Kevin Deane [from the University of Colorado Denver] calls an ‘intent to prevent’ approach to our diseases.” Also discussed in the session was that the patient-physician disconnect leads to poorer outcomes: “Remission to a physician is different than from the point of view of a patient,” she adds.
Davis also attended a session called “Novel Inflammatory Pathways In OA [osteoarthritis],” which looked at treatments to target the inflammatory aspects of OA. She learned that “RA is like your house is on fire and you can put it out with a hose. But for OA, you need a different type of fire extinguisher.”
Rick Phillips attended a session called “2030: A Rheumatology Odyssey,” about the future of RA diagnosis and treatment, in which Dr. Iain McInnes, from the University of Glasgow, discussed how choosing disease targets is very challenging. “Scientists need to understand the nature of the illness. It does not matter how good a drug is if the target is not receptive,” says Phillips, adding that good drugs are very expensive to develop. And while treat-to-target efforts mean patients have better outcomes, “the number of patients not in remission points to the fact that RA is not under control.”
O’Hara-Levi attended “Psychiatry for the Rheumatology Practice,” which examined the overlap of rheumatology and mental illnesses. “I found this session interesting as I am a social worker and have witnessed some doctors not feeling equipped to provide support and even recognize a [psychiatric] emergency. This is an important topic that hasn’t been considered much in the past, as mentioned in the presentation.”
Stay tuned for more highlights from the ACR 2018 Annual Meeting!
Author: Andrea Kane, Arthritis Today medical editor