Richard Sperry1, Jean-Philippe Plancon2, Luis Querol3, Nancy Di Salvo1, Lis Puga4, Nirohshah Trialonis-Suthakharan4
1GBS CIDP Foundation International, 2EPODIN, 3Hospital de la Santa Creu i Sant Pau, 4Patvocates
Objective:
To identify and characterize unmet needs and system-level gaps in the CIDP (Chronic Inflammatory Demyelinating Polyneuropathy) care pathway across Europe, and to inform the development of patient-centered Principles of Care through structured collaboration between patient advocates, caregivers, and healthcare professionals.
Background:
Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) is a rare immune-mediated neuropathy characterized by diagnostic delays, treatment variability, and unequal access to multidisciplinary care across Europe. The Principles of Care (PoC) initiative, led by the GBS | CIDP Foundation International and EPODIN with support from Patvocates, is a 4-year long project, that aims to co-develop a patient-centered European framework to guide advocacy, clinical practice, and policy.
Design/Methods:
By employing a mixed inductive-deductive qualitative design, as part of the Phase 1 of this project, two structured face-to-face workshops were conducted separately with patient advocates and caregivers (n=17) and healthcare professionals (n=16). Discussions were organized around the patient pathway (pre-diagnosis, diagnosis, treatment, supportive care/quality of life) and informed by the COM-B model, Patient Pathway Mapping, and Patient Experience Domains. Data were analyzed using a framework analysis approach supported by AI-assisted qualitative software.
Results:
Participants identified recurrent unmet needs across Europe, including: prolonged diagnostic delays and misdiagnosis; inequitable access to neuromuscular specialists; inconsistent treatment monitoring; limited psychosocial and rehabilitation integration; and insufficient shared decision-making. Visual pathway mapping revealed system-level breakpoints, particularly at referral transitions and long-term follow-up. Despite national variability, convergence emerged on core priorities for timely diagnosis, coordinated multidisciplinary care, structured monitoring, and quality-of-life assessment.
Conclusions:
This study demonstrates the feasibility and adds value of co-developing rare disease care standards through structured patient–clinician collaboration across Europe and be replicated in other regions of the world.
Generative AI Usage
No, did not use generative AI in the drafting or editing in this abstract.
Disclaimer: Abstracts were not reviewed by Neurology® and do not reflect the views of Neurology® editors or staff.