Introduction: The extent to which work productivity, emotional well-being, social interactions, and family life are impacted in patients who self-identify as having chronic inflammatory demyelinating polyneuropathy (CIDP) is not well characterized. Methods: Data from an online survey of 595 individuals with self-reported CIDP, recruited by the Guillain–Barré syndrome (GBS)/CIDP Foundation, were used to assess disease and treatment burden. A total of 37% of patients were classified as “likely”, 34% as “somewhat likely”, and 28% as “unlikely” CIDP. Results: Of ten symptoms that patients with CIDP may experience, each symptom was experienced by 77–94% of “likely”, 79–96% of “somewhat likely”, and 66–91% of “unlikely” patients. In “likely” CIDP patients 44% stopped working because of their symptoms and 24% moved to a new home. The most common treatments were intravenous immunoglobulin (IVIg) infusion and corticosteroids. IVIg was associated with venous access issues and work/school absenteeism. Conclusions: CIDP diagnostic confirmation was not performed in any of the survey respondents. Our results do not add any knowledge on the diagnosis or treatment of CIDP. Our findings do provide insight into the symptoms that patients that think they have CIDP or have been told they have CIDP experience, explores how patients that are labeled as having CIDP view treatment expectations, and highlights how these symptoms affect home and work life. We hope that the findings are constructively used to get patients the services they need to improve quality of life, maintain employment, and ensure a safe home environment regardless of diagnostic accuracy.
Bibliographical noteFunding Information:
Editorial assistance was provided by Joanna Musgrove of Meridian HealthComms, funded by CSL Behring.
We thank Bryter for their development and implementation of the survey. This study and journal?s rapid service and open access fees were funded by CSL Behring. All named authors meet the International Committee of Medical Journal Editors (ICMJE) criteria for authorship for this article, take responsibility for the integrity of the work as a whole, and have given their approval for this version to be published. All authors contributed to the study design, data interpretation, review and approval of the manuscript. Editorial assistance was provided by Joanna Musgrove of Meridian HealthComms, funded by CSL Behring. Jeffrey A. Allen is an employee of the University of Minnesota; has received grants from CSL Behring, consulting fees/honorarium from Akcea, Alexion, Argenx, Momenta, CSL Behring and Biotest; received support for travel to meetings for the study from CSL Behring and payment for lectures from Akcea and CSL Behring. Lisa Butler has nothing to disclose. Todd Levine has received consulting fees/honoraria from Alexion and Grifols. Anne Haudrich is an employee of CSL Behring and holds stock in CSL Behring. The New England Independent Review Board (NEIRB) reviewed and deemed the study as exempt from NEIRB review. All respondents provided informed consent as part of the survey completion. CSL will only consider requests to share Individual Patient Data (IPD) that are received from systematic review groups or bona-fide researchers.?CSL will not process or act on?IPD requests until 12?months after article publication on a public website.?An IPD request will not be considered by CSL unless the proposed research question seeks to answer a significant and unknown medical science or patient care question.?Applicable country specific privacy and other laws and regulations will be considered and may prevent sharing of IPD. Requests for use of the IPD will be reviewed by an internal CSL review committee.?If the request is approved, and the researcher agrees to the applicable terms and conditions in a data sharing agreement, IPD that has been appropriately anonymized will be made available. Supporting documents including study protocol and Statistical Analysis Plan will also be provided. For information on the process and requirements for submitting a voluntary data sharing request for IPD, please contact CSL at firstname.lastname@example.org.
This study and journal’s rapid service and open access fees were funded by CSL Behring.
© 2020, The Author(s).
- Disease burden
- Supportive care