A Global Survey of Disease Burden in Patients Who Carry a Diagnosis of Chronic Inflammatory Demyelinating Polyneuropathy
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ORIGINAL RESEARCH
A Global Survey of Disease Burden in Patients Who Carry a Diagnosis of Chronic Inflammatory Demyelinating Polyneuropathy Jeffrey A. Allen . Lisa Butler . Todd Levine . Anne Haudrich
Received: September 9, 2020 / Accepted: October 15, 2020 Ó The Author(s) 2020
ABSTRACT 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–Barre´ 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
J. A. Allen (&) Department of Neurology, University of Minnesota, Minneapolis, MN, USA e-mail: [email protected] L. Butler GBS/CIDP Foundation International, Conshohocken, PA, USA T. Levine Phoenix Neurological Associates, Phoenix, AZ, USA A. Haudrich CSL Behring, King of Prussia, PA, USA
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. Keywords: CIDP; Disease burden; Supportive care
Adv Ther
Key Summary Points Patients who self-identify as having CIDP frequently report disturbance in balance, pain, and fatigue. These symptoms cannot be used to differentiate patients that are likely or unlikely to have CIDP. Changes in work, home, and social environments are frequently reported by patients that self identify as having CIDP. Because many patients are misdiagnosed with CIDP a greater emphasis on supportive management strategies and access to social services which focus on symptom management is needed. Unlike immunotherapy which is best reserved for well-defined CIDP, supportive interventions may be appropriate regardless of the accuracy of the diagnosis.
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