Presented by: Jonathan Hausmann, MD., Sara Kellahan, NP., Chris Scott, MBChB, Emily Sirotich, PhD, BSc, Helene Alexanderson, PhD., and Anamaria Jones, PhD.
Perspective by: Teri Puhalsky, BSN, RN, CRNI
The recent American College of Rheumatology’s Converge conference and panel discussion, Engaging the Full Rheumatology Care Team to Improve Patient Care and Outcomes, brought together rheumatology providers highlighting the importance of integrating rheumatology professionals into the care team and involving patients as partners in care. Experts from across the globe and different facets of rheumatology care, each presented a unique perspective and something essential for all practicing within the field.
The first presenter, Dr. Christiaan Scott MBChB, discussed the great importance of nurses, and the lack of value placed on nurses in Africa. Since nurses make up the bulk of the healthcare response, children are more likely to be seen first by a nurse. But a lack of policies prioritizing rheumatology, budget allocation to rheumatology, funding for medications, diagnostics, and education allows the great need for pediatric rheumatology nurses to go unseen. While there are now several programs and initiatives training specialist nurses throughout Africa, educating qualified pediatric rheumatology nurses remains undervalued.
Next, Emily Sirotich, Ph(c), the Patient Engagement Lead at the COVID-19 Global Rheumatology Alliance, discussed how to engage patients in the research process. Sirotich covered the opportunities to incorporate and empower patients in their care. Patients are included in partner planning, conducting, and disseminating; essentially, patient partners are researchers. Particularly within the process of early research, patient engagement helps to amplify the patient’s viewpoint, offers a diverse perspective, recognizes, reflects, and ultimately allows patients to drive the research questions being answered.
The third presenter, Helene Alexanderson, Ph.D., RPT, Associate professor at Karolinska University Hospital at the Kalinska Institutet in Stockholm, Sweden discussed how their practice and research evaluates patients. With a practice focused on the idiopathic inflammatory myopathies, Functional Index 2 (F1-2) is used to evaluate muscle endurance to determine if a patient is limited in muscle function. The F1-2 assessment was created engaging patient research and input and has since been implemented in all rheumatology centers in Sweden, with some in Denmark and Norway. Alexanderson emphasized how the involvement of patients in the development of functional outcome assessment tools can improve the relevance and implementation of a new measure.
Lastly, Anamaria Jones, a physiotherapist from Universidade Federal de São Paulo in Brazil discussed their unique training program for OTs and PTs specifically for rheumatology patients. The only training in RMD Rehabilitation in Brazil, this one-year program has trained six students each year since 1997 through theory and practice. Theory training consists of a 64-hour study, while the practice portion is a 670-hour study focused on outpatient and inpatient care. The program has trained over one hundred students currently working in the field in Brazil. More than fifty graduates of the program have moved on to graduate work, while twelve have become university professors in Brazil.
These discussions offer evidence-based insight on how increased incorporation of rheumatology care teams improves patients’ health, how patient engagement in research advances outcomes, and, through a global perspective, further emphasizes the vital need for rheumatology nurses in the field.
Teri Puhalsky, BSN, RN, CRNI
Membership Development Chair Registered Nurse
Medstar Orthopaedic Institute
Teri Puhalsky currently resides in Maryland, where she works as an infusion RN at Medstar Orthopaedic Institute. She studied nursing at Excelsior College School of Nursing and has been practicing rheumatology since 2011. Teri received the Outstanding Clinical Performance Award as an LPN, obtained her CRNI in 2012, and is a member of Sigma Theta Tau International PhiPi Chapter. She strives for positive patient outcomes and firmly believes that collaboration with the healthcare team is critical for chronic disease management. With a patient-focused and evidence-based nursing practice, she knows all patients can receive quality, safe, and effective care.