Objectives To collect relevant data using an anonymous survey to assess patient knowledge of disease and preferences for biologic treatment.
Methods An anonymous patient survey was conducted simultaneously in two busy autoimmune disease centers, Mount Sinai Hospital, Toronto, Canada (MSH) and Winelands Rheumatology Centre, Stellenbosch, Cape Town Area, South Africa (WRC). All patients were approached to participate in an anonymous survey to elicit honest responses to frequently asked questions posed by health care professionals. The survey was developed by nursing staff with a focus on improving their delivery of service and education for optimal patient care. Over a 4 month period, 227 patients completed the survey (175 MSH/52 WRC). The population included patients with Rheumatoid Arthritis, Psoriatic Arthritis, Psoriasis, Vasculitis, Ankylosing Spondylitis, Crohn's Disease, Ulcerative Colitis, and Pemphigus Vulgaris. Surveys were given to those interested in participating on their arrival to the clinic. Patients completed them during their visit to the rheumatology department which included private physician office or biologic treatment clinics. They were able to return them to a central, secured, unmarked box. Informed consent was not required as this was an anonymous qualitative survey to improve patient care and therefore, no identifying information was collected.
Results Patient preference (36% MSH/26% WRC) for location of treatment was to be closer to home. In order to better understand diagnosis and treatment options, 46% of patients at MSH wanted more time with health care provider (HCP) and 40% at WRC wanted more on line resources. In WRC, 52% of patients compared to 30% at MSH knew biologics were genetically engineered. The majority of patients in both centers (38 MSH, 65 WRC) felt that their physician and clinic personnel could assist best with obtaining biologics. Between MSH and WRC there was no significant difference (60% versus 59%) between patient preference for intravenous (IV) vs subcutaneous (SC) delivery of treatment. 35% (MSH) and 47% (WRC) used the assistance of their HCP to decide between available IV and SC biologic treatment.
Conclusions We should provide more opportunity to engage patients in discussion of their disease and treatment options. As HCPs play an important role, MSH needs an enhanced education program to satisfy patient needs. Patients rely directly on their health care team to assist in navigating and obtaining biologics. Patients did not have a preference for IV or SC treatment. Treatment itself was the most important factor, not the delivery system.
patient written surveys.
Disclosure of Interest None declared