Correspondence Between Patients' and Neurologists' Satisfaction With Treatment in Patients With CIDP: Results From a Real-World International Survey
Author(s)
Sandra Paci, PhD1, Febe Marloes Brackx, Ir, MSc2, Clémence Arvin-Berod, PharmD3, Lucas Van de Veire, MA2, Yasmin Taylor, MBiol4, Jack Wright, MSc5, Sarah Dewilde, PhD2.
1argenx BV, Zwijnaarde, Belgium, 2Services in Health Economics (SHE) BVBA, Schaerbeek, Belgium, 3argenx BV, Ghent, Belgium, 4Adelphi Real World, Bollington, United Kingdom, 5Adelphi Real World, Bollington, United Kingdom.
1argenx BV, Zwijnaarde, Belgium, 2Services in Health Economics (SHE) BVBA, Schaerbeek, Belgium, 3argenx BV, Ghent, Belgium, 4Adelphi Real World, Bollington, United Kingdom, 5Adelphi Real World, Bollington, United Kingdom.
OBJECTIVES: Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) is a rare progressive autoimmune disorder affecting the peripheral nerves, characterized by distal and/or proximal muscle weakness and sensory deficits. This study aimed to assess the level of agreement between treatment satisfaction reported by patients and that reported by their treating neurologists.
METHODS: Our analysis utilized matched physician-patient data from Adelphi’s CIDP Disease Specific Programme™, a multinational survey conducted in France, Germany, Italy, and Spain (n=199; April 2022-April 2023). Treatment satisfaction was categorized as “satisfied,” “dissatisfied,” or “neither satisfied nor dissatisfied” for both patients and their neurologists. Agreement between patient and neurologist satisfaction levels was evaluated using Cohen’s weighted kappa.
RESULTS: Of the 199 patients, 164 (82.4%) were receiving treatment at the time of the survey. Among patients, 72% reported being satisfied with their treatment, 7% were dissatisfied, and 22% were neither satisfied nor dissatisfied. In comparison, 83% of neurologists reported being satisfied with their patient's treatment, 5% were dissatisfied, and 12% were neither satisfied nor dissatisfied.
Cohen’s weighted kappa was 0.57, indicating moderate agreement. Patient and neurologist reported the same satisfaction level in 82.2% of cases (70.4% both satisfied, 9.2% both neither, and 2.6% both dissatisfied). When discrepancies occurred, neurologists more often reported a higher satisfaction level than their patients: in 9.9% of cases, the neurologist was satisfied while the patient was neither; in 2.0%, the neurologist was satisfied while the patient was dissatisfied; and in another 2.0%, the neurologist was neutral while the patient was dissatisfied. By contrast, patients reported a higher satisfaction level than their neurologist in only 3.9% of cases.
CONCLUSIONS: Treatment satisfaction was generally aligned between patients with CIDP and their neurologists. However, when differences arose, neurologists tended to report higher satisfaction levels than their patients, highlighting potential gaps in perception that may affect shared decision-making.
METHODS: Our analysis utilized matched physician-patient data from Adelphi’s CIDP Disease Specific Programme™, a multinational survey conducted in France, Germany, Italy, and Spain (n=199; April 2022-April 2023). Treatment satisfaction was categorized as “satisfied,” “dissatisfied,” or “neither satisfied nor dissatisfied” for both patients and their neurologists. Agreement between patient and neurologist satisfaction levels was evaluated using Cohen’s weighted kappa.
RESULTS: Of the 199 patients, 164 (82.4%) were receiving treatment at the time of the survey. Among patients, 72% reported being satisfied with their treatment, 7% were dissatisfied, and 22% were neither satisfied nor dissatisfied. In comparison, 83% of neurologists reported being satisfied with their patient's treatment, 5% were dissatisfied, and 12% were neither satisfied nor dissatisfied.
Cohen’s weighted kappa was 0.57, indicating moderate agreement. Patient and neurologist reported the same satisfaction level in 82.2% of cases (70.4% both satisfied, 9.2% both neither, and 2.6% both dissatisfied). When discrepancies occurred, neurologists more often reported a higher satisfaction level than their patients: in 9.9% of cases, the neurologist was satisfied while the patient was neither; in 2.0%, the neurologist was satisfied while the patient was dissatisfied; and in another 2.0%, the neurologist was neutral while the patient was dissatisfied. By contrast, patients reported a higher satisfaction level than their neurologist in only 3.9% of cases.
CONCLUSIONS: Treatment satisfaction was generally aligned between patients with CIDP and their neurologists. However, when differences arose, neurologists tended to report higher satisfaction levels than their patients, highlighting potential gaps in perception that may affect shared decision-making.
Conference/Value in Health Info
2025-11, ISPOR Europe 2025, Glasgow, Scotland
Value in Health, Volume 28, Issue S2
Code
SA23
Topic
Patient-Centered Research, Study Approaches
Topic Subcategory
Surveys & Expert Panels
Disease
Neurological Disorders