Survey for Chronic Inflammatory Demyelinating Polyneuropathy Shows High Rate of Misdiagnosis and Strong Treatment Response

A survey of individuals with chronic inflammatory demyelinating polyneuropathy (CIDP) showed high rates of misdiagnosis but also good response to treatment. According to the results, 70% of respondents were diagnosed at age 41 to 65, and more than 54% stated it took more than a year to be correctly diagnosed. There were 297 respondents, 62% of whom identified as male and 88% of whom were from the US.

Approximately 30% of respondents stated CIDP often interferes with employment and 51% reported impacts on quality of life. The most common symptoms before starting treatment were loss of balance (51%), weakness in the legs (49%), and fatigue (43%), Depression and moments of hopelessness were reported by 46% and 28%, respectively, and 49% felt embarrassed by their physical limitations.

"It is very clear that we need to do a better job at accurately diagnosing these patients. The sooner we can identify CIDP, the sooner we can start individuals on the proper therapy, alleviate their symptoms and improve their lives," said Jonathan Katz, chief of Neuromuscular Services at California Pacific Medical Center.

Regarding treatment options, 76% of respondents received intravenous immunoglobulin (IVIG) and 11% reported receiving subcutaneous immunoglobulin (SCIG). Within 3 months of first Ig treatment there was a reduction in symptoms reported by 68% of respondents. Immunoglobulin treatment did not help symptoms in 7%. Most (67%) would consider SCIG treatment recommended by neurologist. Interruptions in treatment because of COVID-19 were experienced by 39% of respondents.