Objective:

To develop a conceptual model that characterizes the patient experience of living with chronic inflammatory demyelinating polyneuropathy (CIDP).

Background:

CIDP is a rare, chronic neurological disorder characterized by progressive muscle weakness and impaired sensory function. Patient experiences are heterogenous so understanding the disease burden from the patient perspective is key to informing patient-focused drug development (PFDD). 

Design/Methods:

A targeted literature review (TLR) was conducted using Ovid (Embase, MEDLINE, PsycINFO) and handsearching to identify references that described the patient experience of CIDP. Virtual, 45-minute, semi-structured concept elicitation interviews were conducted with patients from the United States who had a confirmed CIDP diagnosis. Interviews were recorded, transcribed verbatim, and analyzed according to qualitative content analysis principles.

Results:

A preliminary conceptual model of CIDP was developed based on the TLR sources.  Data from n=12 interviews (age 33-77 years, n=7 male, n=6 non-Hispanic White) refined the model. The conceptual model comprised symptom experiences, impacts of CIDP, and treatment experiences (including unmet needs). Patients most frequently reported experiencing muscle weakness (n=12), neuropathic sensations (e.g., pins and needles, tingling) (n=12), numbness (n=10), fatigue (n=10), difficulties with balance (n=8), and pain (n=6). Patients reported they were most bothered by muscle weakness, which was also identified as the most important symptom to treat by the majority of the sample. CIDP most commonly negatively impacted mobility (n=12), activities of daily living (n=12), emotional wellbeing (n=11), work (n=9), hobbies/leisure (n=9), and fine motor skills (n=8). Findings indicated patients would benefit from less burdensome treatment options that better address their core CIDP symptoms.

Conclusions:

Muscle weakness is a debilitating symptom of CIDP which impacts patient functioning across numerous aspects of life. The conceptual model represents important aspects of the CIDP disease experience from the patient perspective and can inform PFDD. Further research is planned to refine outcomes of priority for CIDP patients.