The Journey to Diagnosis for Patients With CIDP: Results From a Real-World International Survey
Author(s)
Clémence Arvin-Berod, PharmD1, Sandra Paci, PhD2, Febe Marloes Brackx, Ir, MSc3, Lucas Van de Veire, MA3, Yasmin Taylor, MBiol4, Jack Wright, MSc5, Sarah Dewilde, PhD3.
1argenx BV, Ghent, Belgium, 2argenx BV, Zwijnaarde, Belgium, 3Services in Health Economics (SHE) BVBA, Schaerbeek, Belgium, 4Adelphi Real World, Bollington, United Kingdom, 5Adelphi Real World, Bollington, United Kingdom.
1argenx BV, Ghent, Belgium, 2argenx BV, Zwijnaarde, Belgium, 3Services in Health Economics (SHE) BVBA, Schaerbeek, Belgium, 4Adelphi Real World, Bollington, United Kingdom, 5Adelphi Real World, Bollington, United Kingdom.
OBJECTIVES: Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) is a rare, progressive, immune-mediated neurological disorder characterized by distal and/or proximal muscle weakness and sensory deficits. This study aimed to describe the diagnostic journey of CIDP patients alongside factors influencing misdiagnosis and time to diagnosis.
METHODS: Data were drawn from Adelphi’s CIDP Disease Specific Programme™ (September 2022 - April 2023), a digital, multinational, real-world survey involving neurologists and their patients in the UK, France, Germany, Italy, and Spain (n=542). The association between misdiagnosis and patient characteristics was tested using Chi-squared tests. A multiple linear regression model was fitted to understand the factors affecting the time to diagnosis.
RESULTS: The mean (SD) age was 54.0 (12.4) years and 62% of patients were male. Most had been diagnosed with typical CIDP (68.0%), with 37% having been misdiagnosed at least once. The most common misdiagnosis was Guillain-Barré syndrome, in 37% of cases. The probability of being misdiagnosed was not significantly associated with sex (p=0.399), disease severity at symptom onset (p=0.924), age (p=0.408), BMI (p=0.471) or CIDP subtype (p=0.244).
The median (Q1-Q3) time between symptom onset and diagnosis was 7.0 (3.2-13.0) months. A multiple linear regression analysis on the log-transform of the time to diagnosis showed that patients with moderate and severe disease severity at symptom onset received a diagnosis more quickly than patients with mild symptoms, with a reduction factor of 0.74 and 0.81, respectively. Additionally, having a CIDP variant increased the time to diagnosis by a factor of 1.22, compared to typical CIDP. Finally, prior misdiagnosis significantly delayed diagnosis, increasing the time by a factor of 1.54.
CONCLUSIONS: On average, patients with CIDP received their diagnosis after 7 months; a third were at some point misdiagnosed. Mild symptoms, having a CIDP variant, and having been misdiagnosed were found to be associated with a longer time to diagnosis.
METHODS: Data were drawn from Adelphi’s CIDP Disease Specific Programme™ (September 2022 - April 2023), a digital, multinational, real-world survey involving neurologists and their patients in the UK, France, Germany, Italy, and Spain (n=542). The association between misdiagnosis and patient characteristics was tested using Chi-squared tests. A multiple linear regression model was fitted to understand the factors affecting the time to diagnosis.
RESULTS: The mean (SD) age was 54.0 (12.4) years and 62% of patients were male. Most had been diagnosed with typical CIDP (68.0%), with 37% having been misdiagnosed at least once. The most common misdiagnosis was Guillain-Barré syndrome, in 37% of cases. The probability of being misdiagnosed was not significantly associated with sex (p=0.399), disease severity at symptom onset (p=0.924), age (p=0.408), BMI (p=0.471) or CIDP subtype (p=0.244).
The median (Q1-Q3) time between symptom onset and diagnosis was 7.0 (3.2-13.0) months. A multiple linear regression analysis on the log-transform of the time to diagnosis showed that patients with moderate and severe disease severity at symptom onset received a diagnosis more quickly than patients with mild symptoms, with a reduction factor of 0.74 and 0.81, respectively. Additionally, having a CIDP variant increased the time to diagnosis by a factor of 1.22, compared to typical CIDP. Finally, prior misdiagnosis significantly delayed diagnosis, increasing the time by a factor of 1.54.
CONCLUSIONS: On average, patients with CIDP received their diagnosis after 7 months; a third were at some point misdiagnosed. Mild symptoms, having a CIDP variant, and having been misdiagnosed were found to be associated with a longer time to diagnosis.
Conference/Value in Health Info
2025-11, ISPOR Europe 2025, Glasgow, Scotland
Value in Health, Volume 28, Issue S2
Code
SA95
Topic
Medical Technologies, Study Approaches
Topic Subcategory
Surveys & Expert Panels
Disease
Neurological Disorders