Mothers report negative effects of FNAIT on emotional, physical health

Mothers reported long-term challenges of FNAIT, such as decisions about whether to pursue future pregnancies and persistent effects on their emotional well-being.

During or following a pregnancy affected by fetal and neonatal autoimmune thrombocytopenia (FNAIT) or hemolytic disease of the fetus and newborn (HDFN), mothers have been shown to experience some key effects on their emotional, physical and social well-being.

The findings come from semi-structured interviews conducted among such individuals and published in a poster presented at the 21st Fetal Medicine Foundation (FMF) World Congress, held in Lisbon, Portugal, from June 23 to June 27, 2024.

In the rare, potentially life-threatening disorder HDFN, the blood types of the pregnant adult and the fetus are incompatible, which results in the pregnant person developing alloantibodies against an antigen found on fetal red blood cells (RBCs). This can lead to the maternal alloantibodies crossing the placenta and binding to the fetal RBCs, with resultant destruction and anemia in the fetus or the newborn.

The rare disease FNAIT is caused by human platelet antigen (HPA) incompatibility between a pregnant adult and the fetus being carried. Maternal immunoglobulin G antibodies against fetal HPA can cross the placenta, destroying fetal and neonatal platelets, which leads to thrombocytopenia.

Although both of these disorders are linked to significant morbidity and mortality in developing fetuses and neonates, they are asymptomatic in the mothers. Recognizing that a dearth of available literature exists that describes the disease burden and unmet needs associated with these two rare pregnancy-related alloimmune disorders from the patient’s perspective, the researchers sought to advance understanding of the impact of such pregnancies on the mothers.

Study shows FNAIT-affected mothers need more support

They conducted qualitative, semi-structured interviews with mothers who had experienced at least one pregnancy in which either HDFN (n=10) or FNAIT (n=8) had been diagnosed. The Mother-Generated Index (MGI)—a three-step patient-reported outcome measure that evaluates antenatal and postnatal quality of life—was mailed to all participants to complete and return.

In the MGI, the mothers were asked to record up to eight areas of their lives that they believed had been impacted by having a baby. In this particular study, the mothers were told to complete the MGI while they considered their most recent pregnancy affected by HDFN or FNAIT. All of the interviews were recorded and then transcribed verbatim. Thematic analysis was used to evaluate the transcripts and the data obtained from the MGI.

Results of the study revealed that an HDFN-or FNAIT-affected pregnancy involved several impacts, including those related to diagnosis, allocating time for and tolerating treatments, and uncertainties that existed in the neonatal period.

The most often reported effects of HDFN or FNAIT that were experienced during pregnancy included the following:

  • Emotional well-being (anxiety, worry, fear): HDFN, 100%; FNAIT, 100%
  • Physical well-being (fatigue, reduced energy): HDFN, 80%; FNAIT, 71%
  • Social well-being (relationships with family and friends): HDFN, 80%; FNAIT, 71%

Of note, concept-level findings among those with FNAIT were based on a total of seven pregnancies, with one of the eight participants diagnosed after giving birth and thus unable to report the effects during pregnancy.

In the postnatal period, the participants reported also tackling long-term challenges of HDFN or FNAIT, such as decisions about whether to pursue future pregnancies and persistent effects on their emotional well-being.

Findings from the MGI data were consistent with those from the qualitative interviews; social well-being and emotional well-being were the most relevant to participants’ experiences.

“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 pregnancies,” the authors concluded.