Understanding the Lived Experience of Fetal and Neonatal Alloimmune Thrombocytopenia: A Qualitative Study

Objective Fetal and neonatal alloimmune thrombocytopenia (FNAIT) is a rare alloimmune disease of pregnancy. This study aimed to better understand the disease burden of FNAIT and its impact on families through qualitative research. Study Design This exploratory qualitative study involved thematic analysis of semi-structured virtual interviews and group sessions (Cohort 1: October 2021-November 2024; Cohort 2: April-May 2025) with members of the FNAIT Patient Council from the United States, Canada, the United Kingdom, Australia, and the Netherlands, organized by Johnson & Johnson. Results There were 10 participants (9 female, 1 male) in Cohort 1 and 12 female participants in Cohort 2. Cohort 1 themes included the challenging and inconsistent diagnostic path, responsibility for self-education and self-advocacy, and navigation of unclear care pathways. Cohort 2 themes included the challenging diagnostic path, wider impacts on families and family planning, burdensome treatments, mental health, and opportunities to improve overall experiences. Conclusion These qualitative findings demonstrate the weight of the emotional, logistical, and financial burden placed on families affected by FNAIT. Unmet needs include improved antenatal screening and earlier diagnosis, less burdensome treatment, more psychosocial support, and improved awareness of FNAIT among healthcare providers.