To assess the impact of chronic inflammatory demyelinating polyneuropathy (CIDP) disease-related disability and treatment on domestic arrangements, and work activities.

Although CIDP is treatable, disease-related disability is common. The extent to which disability impacts domestic arrangements, or work activities is not well characterized.

Data from an online survey of 475 individuals, aged ≥18 years, recruited by the GBS/CIDP Foundation and self-reported to have CIDP, were used to assess disease and treatment burden. Data were analyzed overall and by stratification of patients based on the likelihood of an accurate CIDP diagnosis.

Patients were stratified into “likely CIDP” (n=187), “somewhat likely CIDP” (n=170), and “unlikely CIDP” (n=118) based upon questionnaire responses. Patients categorized as “likely CIDP” had symptoms when starting treatment which were loss of balance/coordination, weakness in hips/legs, and pain and numbness in hands and feet. Among all respondents, 24% moved to a new home and 40% made adaptive home changes after they were given a CIDP diagnosis. Moreover, 47% stopped working after the diagnosis, 20% missed school/work within the past month, and 14% made timing changes to their work environment. The most common treatments were intravenous immunoglobulin (IVIG) [63% currently using] and corticosteroids (19%). Corticosteroids were discontinued in 68% of users, among these 37% discontinued due to tolerability issues. A full day or more from school/work was missed with each infusion session in 27% of IVIG-treated patients and venous access difficulty was reported by 8%. A subgroup analyses (n=32) showed that benefits of SCIG administration and avoiding difficulties with IVIG infusion were the most common reasons for SCIG preference (81% and 38% respectively). Further analysis by stratification group will be presented.

Results from this nationwide survey demonstrate that both CIDP and commonly prescribed CIDP treatments are associated with disease and treatment burdens that impact school, work, and home activities.