Employment, daily activities and caregiver burden in CIDP: results of a real-world US survey

Topic:

Other

Poster Number: P381

Author(s):

Dustin Nowacek, MD, Argenx US Inc., Boston, MA, USA, Swapna Karkare, MS, argenx, Clémence Arvin-Berod, PharmD, Argenx BV, Ghent, Belgium, Arash Mahajerin, MD, MSCR, argenx, Febe Brackx, MSc, SHE, Brussels, Belgium, Lucas Van de Veire, MSc, SHE, Brussels, Belgium, Rabiyah Sahar, Adelphi Real World, Bollington, UK, Yasmin Taylor, Msc, Adelphi Real World, Bollington, UK, Jack Wright, Msc, Adelphi Real World, Bollington, UK, Jonathan deCourcy, Bsc, Adelphi Real World, Bollington, UK, Sarah Dewilde, PhD, SHE, Brussels, Belgium

Background
Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) is a rare neuromuscular disorder that causes weakness and sensory symptoms, affecting patients’ personal and professional functioning.

Objectives
This analysis sets out to establish the burden of illness for CIDP in the US.

Methods
The Adelphi CIDP Disease Specific Programme™ is a real-world, cross-sectional survey of US CIDP patients and their neurologists conducted between September 2022 and April 2023. Patients voluntarily provided data including, but not limited to, Inflammatory Rasch-built Overall Disability Scale (I-RODS) scores, employment status, and use of a caregiver and mobility aids, which were matched to electronic records forms completed by their physician (capturing baseline characteristics and treatment history).

Results
Mean (SD) patient age was 57.5 (10.5) years, and 64% were male. At the time of survey, 82% of patients in the total sample (n=76) were receiving treatment, primarily immunoglobins (65%) or corticosteroids (39%). The most important treatment goals reported by patients (n=73) were “improving overall quality of life” (25%), “improving balance and co-ordination” (23%), and “regaining control/function of arms and/or legs” (18%). Despite treatment, 42% continued to experience moderate-severe symptoms. Mobility aids were needed by 59%, most commonly a cane or walking stick (59%, n=44/75).
Patients found certain daily activities difficult or even impossible, indicated through I-RODS items such as “bend and pick up an object” (58%), “walk one flight of stairs” (61%) and “remain standing for a long period of time” (63%). Nearly a third required caregiver help, usually from a partner/spouse (80%). On average, patients needed 5 hours of care/help per day (n=18).
Many were unemployed (22%), not working due to retirement (20%), on long term sick leave (13%) or working part time (3%), 41% of whom reported this was due to CIDP.

Conclusion
CIDP imposes a substantial burden on patients, limiting their ability to work and perform daily activities. As a result, many require caregiver assistance.