Immune system self-assessment supports patients seeking a diagnosis

Even though doctors diagnosed Audrey Adamson with common variable immune deficiency (CVID) 10 years ago, she recently took the Immune Deficiency Foundation’s (IDF) immune self-assessment. The symptoms listed on the self-assessment aligned with her experience as a person with primary immunodeficiency (PI), including a lifetime of sinus infections, bronchitis, and other chronic and unusual infections.

“I wanted to see what it was like and to see if it’s something I could suggest to new people. And I would suggest it. It was very helpful. I looked through it and thought, ‘I would have wanted this at the beginning when I first started having symptoms,'" said Adamson, 42.

The self-assessment is a series of yes-or-no questions designed to provide patients with information for the early detection of PI so they can better manage their health. If a person answers “yes” to a question, they are prompted to describe instances of that symptom or event, allowing the assessment to present a more comprehensive health history.

While the assessment is not meant to provide a medical diagnosis, it can help people track and document symptoms that could point to PI so they can discuss results with their healthcare provider.

“Given that there are more than 550 different types of PI, the tool serves as an important first step in helping individuals recognize patterns that might otherwise go unnoticed,” said IDF Chief Communications Officer Tammy Black.

“The assessment reflects IDF’s broader mission to support individuals who may be living with undiagnosed immune system disorders and to promote earlier recognition of these conditions within the medical community.”

Launched last fall, the 13-question assessment asks about frequency, severity, and types of infections; enlarged lymph nodes and recurring fevers; family history of infections; and number of referrals to specialists.

The IDF Medical Advisory Committee (MAC) decided which questions to include and created the format of the results so that patients have something tangible to take to their provider. The documentation of symptoms can facilitate a more informed discussion with healthcare providers about whether further evaluation might be warranted.

“The assessment serves as an educational and preparatory tool for meaningful healthcare conversations,” said Black. “Individuals can use the results as valuable insights they can share with their doctor to discuss next steps.”

Adamson said having a list of symptoms is enlightening for both patients and doctors.

“I’ve really come to trust IDF, and I would tell people I think this assessment is really helpful for you to look at and take and consider,” she said.

“I'm glad the self-assessment tool is there. When I was traveling through my journey, I didn't know what was going on or where to go. And if my hematologist hadn't gotten me there, I don't know what I would have done. Even though the assessment wasn't there when I was diagnosed, every step we take forward to help others is absolutely great.”

A follow-up survey about the assessment found that a third of users had a prior diagnosis, and used the tool for confirmation and understanding of PI. Half of users said they made medical appointments after the assessment, highlighting the tool’s role in healthcare action for patients. About 30% reported a reduction in diagnosis time after using the tool. Most said they’d recommend it to others.

Christina Deane, 76, who also took the assessment, said IDF resources empowered her to advocate for herself while she was in the process of getting diagnosed with CVID 15 years ago. She is excited that there is now a tool to get the conversation about PI started with providers and a way for patients to build an even stronger case for PI testing. By confirming her symptoms, the assessment reminded her that she is not alone as a zebra.

“I’ve learned that I’m not unique,” said Deane. “The self-assessment shows that people have had similar struggles to mine getting a diagnosis.”