OBJECTIVES: To advance the understanding of impacts associated with the experience of a pregnancy affected by Hemolytic Disease of the Infant and Newborn (HDFN) or Fetal/Neonatal Alloimmune Thrombocytopenia (FNAIT) from the patient perspective.

METHODS: Qualitative, semi-structured interviews were conducted with mothers who had at least one pregnancy diagnosed with either HDFN (n=10) or FNAIT (n=8). All participants were recruited from the United States via a research partner following IRB approval. The Mother-Generated Index (MGI) was mailed to participants to complete and return in their own time. Interview and MGI data were analyzed using thematic analysis methods.

RESULTS: An HDFN or FNAIT affected pregnancy encompassed several impacts including those associated with diagnosis, making time for, and tolerating treatments, and uncertainties during the neonatal period. These include a variety of negative impacts on emotional well-being (anxiety and worry), physical well-being (fatigue, tiredness, and reduced energy levels) and social well-being (relationships with family and friends; both positive and negative). Mothers also face challenges including decisions regarding future pregnancies and their ability to work.

Participants recorded MGI areas important to them, allowing for a deeper understanding of what is relevant to mothers impacted by HDFN or FNAIT. MGI data confirmed the results generated by the qualitative interviews, with social well-being and emotional well-being impacts most relevant to the experiences of participants.

CONCLUSIONS: The results of this study contextualize significant impacts that mothers experience during and after an HDFN or FNAIT affected pregnancy. The qualitative interviews with mothers identified several areas of well-being that were affected, which were also affirmed by MGI data. This research provides important insights into disease areas with limited patient-generated information and provides direction for future studies on health and well-being in these high-risk pregnancies.