OBJECTIVES: Chronic inflammatory demyelinating polyneuropathy (CIDP) is a rare, immune-mediated neurological disorder. Despite available treatments (e.g., intravenous immunoglobulin [IVIG]), CIDP can present a substantial burden for patients. The objectives of this study were to capture patients’ experience and satisfaction with currently available standard of care CIDP treatments (e.g., IG therapy, steroids, immunosuppressants, or rituximab), and the impact of CIDP on quality of life (QoL).

METHODS: This was a cross sectional, observational study in adult patients diagnosed with CIDP in the United States. A web-enabled survey was used to quantitatively collect information on self-reported CIDP treatment experience and satisfaction across treatment attributes (e.g., efficacy, dosing frequency, route of administration [RoA]) and QoL.

RESULTS: In total, 71 patients completed the quantitative survey (average age, 52 years; 79% female). Most patients (n=53, 75%) were currently receiving IVIG, then subcutaneous IG (n=17, 24%). Overall, n=38 (54%) of the patients surveyed reported a lack of response to prior therapy or residual disability despite prior treatments. Less than half of patients rated high satisfaction (≥6 points on 1-7 scale) with any attribute of their current CIDP treatment; the least satisfaction was for RoA and dosing frequency. Two-thirds of patients surveyed (n=48, 68%) reported that CIDP had a strong to significant impact on their QoL (≥6 points). Across activities of daily living, ambulation was the most affected by CIDP (n=57, 80% indicated at least some impact; ≥3 points), followed by personal hygiene (n=46, 65%), dressing (n=41, 58%), continence (n=33, 46%), toileting (n=31, 44%), and feeding (n=27, 38%).

CONCLUSIONS: Findings from this study underscore the considerable unmet needs and burden of CIDP, including moderate to low satisfaction with current treatments, and the strong negative effect on QoL. Additional research is needed to understand how future therapies can alleviate the disease and management burden of CIDP.