Each year, hundreds of graduate-level health sciences students benefit from attending an innovative interprofessional education (IPE) forum focused on scleroderma in Albany, New York. The patient-centered IPE has become a model for provider education and is made possible by a partnership among the Steffens Scleroderma Foundation, Sage Colleges Health Sciences, Albany College of Pharmacy and Health Sciences, and Dr. Lee Shapiro’s Scleroderma Center at Albany Medical College.
The goals of the IPE are to reduce the time to diagnosis and improve the quality of care for scleroderma patients. Since scleroderma is a rare disease with variable symptoms that can potentially impact several different parts of the body (skin, lungs, vascular, gastrointestinal, kidney, and heart), it’s difficult to diagnoses and treat. The IPE provides an introduction to the disease with the hope that no patients are greeted with a blank stare when mentioning their diagnosis to a healthcare professional.
Photo credit: Tamara Hansen, The Sage Colleges, courtesy of Ruckert Advertising & Public Relations’ Facebook page
Each IPE includes students from five health-professional schools at Sage Colleges (occupational therapy, physical therapy, nursing, nutrition and psychology) and pharmacy students from the Albany College of Pharmacy—a total of about 200 students at each IPE. A unique feature of this IPE is the participation of about 30 patients with scleroderma. Each patient is assigned to a team of multi-discipline health professional students. The students and patients actively engage in an open conversation to understand the needs of the patient and the potential benefits of a discipline within the healthcare team.
Additional elements of the IPE include a patient keynote speaker, an expert panel that fields student participant questions, and a panel of students who question the patient-keynote speaker, with their interview questions reviewed/critiqued by the coordinator of the Patient Simulation Program at Albany Medical College. The partnership presented its third Scleroderma IPE Forum on November 4, 2019 at The Albany College of Pharmacy and Health Sciences gymnasium. The feedback from both students and patient participants has been extremely positive.
The IPE is believed to be the first scleroderma educational experience of its kind that includes patient participation. There are about 45 Scleroderma Centers in the United States and there is interest in providing it as a “best practice" model that might be established at other centers.
In an ongoing effort to promote awareness and understanding of scleroderma, the Steffens Scleroderma Foundation held its 4th annual Interprofessional Education (IPE) Forum on March 24, 2021. The virtual event used Zoom to connect 238 professionals, students and patients, who participated from the comfort of their homes, offices and dorms.
The IPE involved students from five health professional schools at Russell Sage College (occupational therapy, physical therapy, nursing, nutrition and psychology), SUNY Albany's School of Public Health, and the Albany College of Pharmacy, for a total of about 200 students. The IPE introduces students in the health sciences to Scleroderma with the objective that future health care professionals are better informed about this rare and complex autoimmune disease.
Groups of students from each professional discipline were paired with individuals diagnosed with Scleroderma, and some caregivers of loved ones with Scleroderma. The students were assigned learning objectives regarding Scleroderma prior to the event. There were multiple speakers as well as small group discussions held in breakout rooms. In this more personal format, patients and caregivers shared their stories about the journey toward diagnosis, and the challenges of living with this difficult disease. The students were then invited to ask questions of the patients in order to better understand the patient’s needs and the potential role of each discipline in the treatment and management of Scleroderma.
Amy Gietzen, a patient advocate and motivational speaker was diagnosed with scleroderma at age 19. Ms. Gietzen was the keynote speaker for the IPE this year. She discussed the challenges and successes of living with a rare autoimmune disease for more than two decades. During the summer of 2020, she had complications from her illness and was hospitalized. Unfortunately, as is common with Scleroderma, sher found herself being treated by staff who were unfamiliar with her disease. Unable to have family with her due to Covid restrictions, she expressed the feeling of vulnerability and lonliness. Out of fear of being mismanaged, she stayed awake for several days in order to ensure the staff understood her diagnosis and avoided medical errors. This powerfully illustrated the objective of the IPE to the attendees. Later in the event, students had the opportunity to question Amy about her experiences.
The event also featured an Expert Panel from diverse specialties. They answered questions from student participants. Questions from the students for patient participants as well as the Expert Panel were critiqued by Heather Frenz, coordinator of the Patient Simulation Program at Albany Medical College and a person with Scleroderma herself. Feedback from students, participants with Scleroderma, and their caregivers, has been extremely positive. The success of the IPE is a result of a growing partnership between the Steffens Scleroderma Foundation, Russell Sage College, Albany College of Pharmacy and Health Sciences, SUNY Albany’s School of Public Health and Dr. Lee Shapiro’s Scleroderma Center at Albany Medical College. The ultimate goal of the IPE is to raise awareness amongst entry level health care professionals at a clinical level. The hope is that this will contribute to the reducing the length of time from onset of early symptoms, to accurate diagnosis and effective disease management for people with Scleroderma. The Steffens Scleroderma Foundation continues to be a driving force in promoting awareness and understanding of Scleroderma among health care professionals as well as promoting research. We thank everyone for their participation and making this event a success.
There has been much activity this quarter in the area of research and projects regarding both Scleroderma and Degos Disease.
The Steffens Scleroderma Foundation will present the IPE as a model at the national Scleroderma Foundation Annual Meeting in July 2021 to demonstrate the role of individuals with Scleroderma as educators to health care providers. Additionally, a poster presentation will be submitted on the subject.
The Steffens Scleroderma Foundations would like to extend our ongoing appreciation of your interest and past participation in our educational event(s). Several of Russell Sage College dietetic interns (now graduates) put together various recipes (see file below) in lieu of the nutrition table that we were able to have during our in-person events.
Thank you again for your ongoing support and participation in sharing your experiences with future healthcare professionals. Please email Michelle Morgan, firstname.lastname@example.org, directly if you would like to be involved in our next IPE event (date TBD).