Experiences of Immunoglobulin Therapy for Those with a Confirmed Diagnosis of Chronic Inflammatory Demyelinating Polyneuropathy: A Mixed-Methods Study with a Qualitative Patient Perspective Focus.

Introduction: This survey aimed to characterize the patient experience with disease and immunoglobulin (Ig) treatment including quality-of-life in those with a neurologist-confirmed diagnosis of Chronic Inflammatory Demyelinating Polyneuropathy (CIDP). Methods: CIDP patients (n=42) from the United States (n=31) and Europe (n=11) with Ig treatment experience completed an online 20-minute questionnaire, followed by virtual 60-minute in-depth interviews. Interviews were recorded, transcribed verbatim, and analyzed using NVIVO 12 qualitative data analysis software. Results: Patients reported substantial delays between initial symptoms and CIDP diagnosis (median 2 years, range 0-15 years), and a profound impact of disease across physical, social, and psychological domains. Physical impact included inability to perform everyday tasks such as household chores and need to utilize assistive devices (eg walkers, wheelchairs). Patients reported substantially reduced social and leisure activities, and associated emotional impact due to social isolation and loss of independence, especially loss of driving ability. The majority retired and/or went on disability within a year of CIDP diagnosis. Notwithstanding some delays in initiating Ig treatment, both Intravenous Immunoglobulin (IVIG) and Subcutaneous Immunoglobulin (SCIG) were generally perceived as highly effective with 69% of patients reporting vast improvements in physical function, including renewed strength, restored ability to walk and perform everyday tasks, and reduced pain. SCIG patients (24%) expressed a preference for SCIG due to its ease of use and minimal disruption to daily life. Overall, 36% of patients reported their physicians ceased their Ig therapy, reduced dose or dosing frequency upon CIDP symptom improvement, with 33% of those patients subsequently worsening, but recovering upon returning to the original dose. Patients expressed a desire for continuing Ig treatment due to fear of disrupting its benefits. Conclusion: Patients reported substantial impact of CIDP across physical, social, emotional and employment-related domains. Patients reported being highly satisfied with Ig therapy and committed to continuing treatment.