In a recent study, mothers affected by either fetal and neonatal autoimmune thrombocytopenia (FNAIT) or hemolytic disease of the fetus and newborn (HDFN) reported their diagnoses had a negative effect on their physical and emotional well-being.
The findings from qualitative, semi-structured interviews were reported in a poster presentation at the International Society for Pharmacoeconomics and Outcomes Research (ISPOR) Annual Meeting. The meeting was held in Atlanta, Georgia, May 5-8, 2024.
In HDFN, the blood types of a pregnant patient and the fetus are incompatible, which leads to the formation of alloantibodies against an antigen on fetal red blood cells. In FNAIT, human platelet antigen (HPA) incompatibility is reported between a mother and the fetus. In the latter disorder, maternal immunoglobulin G antibodies against fetal HPA cross the placenta, leading to the destruction of fetal and neonatal platelets.
The researchers sought to advance our knowledge about the impact of an HDFN- or an FNAIT-associated pregnancy from the mother’s point of view. They conducted interviews among mothers with ≥1 pregnancy in which HDFN or FNAIT had been diagnosed. A total of 10 patients who had experienced HDFN and 8 who had experienced FNAIT were enrolled in the study.
All of the eligible study participants had experienced one or more prior pregnancies in which they had been diagnosed with either HDFN or FNAIT.
The participants were mailed the Mother-Generated Index (MGI) to complete and send back. The MGI is described as a three-step patient-reported outcome measure designed to evaluate antenatal and postnatal quality of life. The mothers needed to record at least eight areas of their lives that had been affected by having had a baby. In the current analysis, the participating mothers were asked to complete the MGI while they considered their pregnancy that had been most recently affected by either HDFN or FNAIT.
Among the participating mothers who reported experiencing an HDFN- and FNAIT-impacted pregnancy, several major effects were noted, including those linked to the diagnosis, finding the time to undergo treatments, tolerating the treatments, and the presence of uncertainties during the neonatal phase.
Those effects of HDFN or FNAIT that were most often reported during pregnancy involved negative effects of either of the two diagnoses on emotional well-being, which included anxiety, fear or worry. Additionally, an impact on physical well-being, including decreased energy levels and fatigue, was reported in 80% of those in the HDFN group and 71% in the FNAIT group. Overall, 80% of those in the HDFN arm and 71% of those in the FNAIT arm also reported an impact on their social well-being with regard to family and friends.
“The results of this study contextualize significant impacts that mothers experience during and after an HDFN- or FNAIT-affected pregnancy,” the authors wrote. “This research provides important insights into disease areas with limited patient-generated information and direction for future studies on the assessment of health and well-being in these high-risk groups.”
