Parents of children with fetal and neonatal alloimmune thrombocytopenia (FNAIT) report significant gaps in patient-provider relationships when it comes to diagnosis and treatment, according to a poster presentation at the National Organization for Rare Diseases (NORD) Breakthrough Summit 2025.
“There is a need for healthcare professional education and to reduce patients’ burdensome responsibility for self-education and self-advocacy,” the authors explained.
The study included 10 participants with prior FNAIT experience who attended both group and individual interview sessions. In order to identify common themes, patients were asked to discuss their experiences with the disease and what unmet needs they had throughout the process. Interviews took place between October 2021 and November 2024.
The first major theme that emerged from the responses was an inconsistent and difficult path to diagnosis. Many participants shared that FNAIT was only diagnosed by chance when trying to rule out other conditions. Patients expressed frustration at how easy it was to diagnose the condition via a simple blood draw.
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Others were told that their child may have a bacterial infection or cancer, contributing to significant anxiety and confusion among parents. Diagnostic delays also led to prolonged feelings of uncertainty and exhaustion.
Once parents received a diagnosis of FNAIT, their worries did not disappear. Instead, participants expressed fear related to the potential long-term consequences of the disease on their baby. Some described imagining worst-case scenarios, as they did not know what to expect.
The second major theme was the need for parents to educate and advocate for themselves after receiving their FNAIT diagnosis. Participants wished that more healthcare providers had a greater knowledge of the condition in order to lift some of the burden off of patients.
Furthermore, patients often found themself in the position of the expert in conversations with their doctors, having to advocate for themselves and their babies. They expressed appreciation for the doctors who took the time to listen to their concerns and offer emotional support.
In terms of treatment, participants understood that available treatment options such as intravenous immunoglobulin (IVIG) were effective but reported significant side effects from the treatment.
Together, the researchers concluded, these findings underscore the need to address patient feelings of confusion and fear while also improving provider education surrounding FNAIT.
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