Real-World Socioeconomic Burden and Health-Related Quality of Life (HRQoL) for Patients Living with Chronic Inflammatory Demyelinating Polyradiculoneuropathy (CIDP) in the UK: Results From an Online Patient Survey
Author(s)
Michael Harding, MChem1, Emily Ord, PhD2, Anna Tran, MSc1, Aoife Kearney, MSc1, Megan Watts, MSc1, Rosa Willock, MSc1, Rich Collins, MSc3.
1Decisive Consulting Ltd, a Herspiegel Company, London, United Kingdom, 2Argenx UK, Buckinghamshire, United Kingdom, 3Inflammatory Neuropathies UK, Sleaford, United Kingdom.
1Decisive Consulting Ltd, a Herspiegel Company, London, United Kingdom, 2Argenx UK, Buckinghamshire, United Kingdom, 3Inflammatory Neuropathies UK, Sleaford, United Kingdom.
OBJECTIVES: To assess the functional status, HRQoL, treatment satisfaction and socioeconomic burden in adults ≥18 years old living with CIDP in the UK.
METHODS: A cross-sectional, web-based survey captured quantitative and qualitative self-reported data from adults ≥18 years old diagnosed with CIDP. Survey variables included demographics, diagnostic history, disease severity, current therapy, treatment satisfaction, patient HRQoL (EQ-5D-5L and EQ-VAS), work impact, out-of-pocket expenses, travel burden and care provision. Data were analysed using descriptive statistics.
RESULTS: Sixty-three patients completed the survey (50.8% female; 77.8% >55 years). Almost half of patients (n=31, 49.2%) reported at least one prior misdiagnosis. The greatest share (n=22, 34.9%) of patients experienced symptoms for 3-6 months before receiving their diagnosis whilst a proportion (n=11, 17.4%) reported experiencing symptoms for ≥3 years before diagnosis. Mean EQ-5D-5L utility and EQ-VAS were 0.595±0.234 (standard deviation; SD) and 56.0±20.1 (SD) respectively. Most patients (n=39, 62%) reported that they “often” or “always” worry about how they will manage their symptoms in the future. Among patients receiving current treatment, intravenous immunoglobulin (IVIg) was the most common (n=30, 61.2%). Patients who were not satisfied accounted for 28.5% (n=14) of the treated cohort, with IVIg users citing the most concerns (n=6, 20.0%), with issues including infusion frequency (n=3, 50.0%) and perceived lack of symptom control (n=3, 50.0%). Personal costs were heterogeneous: mean 3-month expenditure was £67.60 for over-the-counter medicines (range £1-£400) and £800 for elective physiotherapy (range £1-£5000). Most patients (n=34, 72.3%) receive informal care for managing their symptoms, frequently provided by their spouse or partner (n=32, 84.2%).
CONCLUSIONS: Findings highlight the unmet need and burden associated with CIDP, driven by reduced HRQoL (lower EQ-5D-5L compared to population norms reported by McNamara 2023), treatment dissatisfaction and substantial out-of-pocket expenses. Further research is required into alternative treatments, diagnostic challenges, and optimal care provision for managing CIDP symptoms.
METHODS: A cross-sectional, web-based survey captured quantitative and qualitative self-reported data from adults ≥18 years old diagnosed with CIDP. Survey variables included demographics, diagnostic history, disease severity, current therapy, treatment satisfaction, patient HRQoL (EQ-5D-5L and EQ-VAS), work impact, out-of-pocket expenses, travel burden and care provision. Data were analysed using descriptive statistics.
RESULTS: Sixty-three patients completed the survey (50.8% female; 77.8% >55 years). Almost half of patients (n=31, 49.2%) reported at least one prior misdiagnosis. The greatest share (n=22, 34.9%) of patients experienced symptoms for 3-6 months before receiving their diagnosis whilst a proportion (n=11, 17.4%) reported experiencing symptoms for ≥3 years before diagnosis. Mean EQ-5D-5L utility and EQ-VAS were 0.595±0.234 (standard deviation; SD) and 56.0±20.1 (SD) respectively. Most patients (n=39, 62%) reported that they “often” or “always” worry about how they will manage their symptoms in the future. Among patients receiving current treatment, intravenous immunoglobulin (IVIg) was the most common (n=30, 61.2%). Patients who were not satisfied accounted for 28.5% (n=14) of the treated cohort, with IVIg users citing the most concerns (n=6, 20.0%), with issues including infusion frequency (n=3, 50.0%) and perceived lack of symptom control (n=3, 50.0%). Personal costs were heterogeneous: mean 3-month expenditure was £67.60 for over-the-counter medicines (range £1-£400) and £800 for elective physiotherapy (range £1-£5000). Most patients (n=34, 72.3%) receive informal care for managing their symptoms, frequently provided by their spouse or partner (n=32, 84.2%).
CONCLUSIONS: Findings highlight the unmet need and burden associated with CIDP, driven by reduced HRQoL (lower EQ-5D-5L compared to population norms reported by McNamara 2023), treatment dissatisfaction and substantial out-of-pocket expenses. Further research is required into alternative treatments, diagnostic challenges, and optimal care provision for managing CIDP symptoms.
Conference/Value in Health Info
2025-11, ISPOR Europe 2025, Glasgow, Scotland
Value in Health, Volume 28, Issue S2
Code
PCR207
Topic
Patient-Centered Research
Topic Subcategory
Adherence, Persistence, & Compliance, Health State Utilities, Patient-reported Outcomes & Quality of Life Outcomes
Disease
Neurological Disorders, Rare & Orphan Diseases