P.030 The journey with CIDP- a Canadian perspective

Abstract

Background: Chronic Inflammatory demyelinating polyradiculoneuropathy is a rare disorder of the peripheral nerves. A disease affecting up to 8.9 out of 100,000 people, and a yearly incidence of 1.6/100,000 people, CIDP is a condition that is treatable but still relatively unknown outside of the neuromuscular community. The purpose of this research, initiated by the GBS/CIDP Foundation, is to better understand a patient’s journey living with the disease and identify unmet needs. Methods: The research consists of a mix of structured interviews, digital ethnography and patient records. A total of 10 Canadian patients living with CIDP and their caregivers, 7 Canadian neurologists and 3 Canadian neuroscience nurses will be the subjects for our research. Results: In order to identify key interactions between patients and the healthcare system, the report will map a patient’s experience on 4 distinct planes. Clinical journey (ex: first symptoms, diagnosis, disease progression), Patient emotional journey (the emotional states the patient undergoes throughout his/her journey), Caregiver emotional journey, and Outcomes (ex: delays in care, damaged relationships, commitment to therapy). The report will identify key areas along the patient journey where more intervention is possible and where more research may be needed. Conclusions: The research is expected to be completed by April 2019.