Clinicians at the University of Utah conducted a groundbreaking study revealing patients with common variable immune deficiency (CVID) experience significant neurologic manifestations affecting their quality of life.
In the survey, 78 adults with CVID self-reported many common neurologic symptoms, with more than 85% stating they had sleep problems, fatigue, and headaches. Other neurologic issues reported by more than 64% of respondents included depression, dizziness, muscle weakness, memory difficulty, changes in vision, numbness/tingling/burning, and pain. Ten CVID patients had epilepsy or seizures.
“The bottom line is that the burden of neurologic symptoms in CVID is more than we anticipated, and it's significant, and it is across a wide variety of neurologic symptoms,” said Dr. Stacey Clardy, a University of Utah Associate Professor of Neurology and Director of the University of Utah Autoimmune Neurology Clinic, who presented the findings during an Immune Deficiency Foundation (IDF) webinar.
“We should be picking up on this more than we are. It shouldn't be that this questionnaire is really what drove it home for us.”
Funded by an IDF research grant, the study grew from efforts by Clardy and her colleagues in immunology at the University of Utah to treat CVID patients with neurologic problems more holistically. After discovering that a man with lung granulomas, hand tremors, facial pulling, and vision loss had CVID, Clardy regularly checked immunoglobulin levels and sent suspected CVID patients to immunology. In turn, the immunologists referred patients with neurological issues to Clardy for care.
A lack of literature on the relationship between CVID and neurologic issues made the topic a prime area of study, and the clinicians decided to ask their own patients about their symptoms and how they were functioning with the neurologic condition or symptoms.
Based on study outcomes, researchers learned:
People living with CVID report a higher prevalence of common neurologic symptoms and a higher impact on quality of life than the general population or traditional neurologic populations.
Patients with CVID should be aware of common neurologic symptoms and seek care if necessary.
Clinicians should screen patients with CVID for the presence of these symptoms and refer them to neurologists or provide symptomatic treatment when indicated.
Study results also point to the need to:
Expand education for neurologists, particularly because many of the medications used in the field suppress the immune system.
Educate immunologists/infectious disease specialists on the neurologic involvement with CVID patients.
Recommend that all clinicians obtain a focused history of infections.
“All docs need to be a little bit more systemic in order to understand what’s going on with CVID and not be locked into our specialty organ system where we’re going to be doing a disservice to CVID patients,” said Clardy.