Women with primary antibody deficiencies requiring IgG replacement therapy: their perception of prenatal care during pregnancy

Abstract

Objective: To investigate how a group of women with primary antibody deficiencies (PAD) and receiving replacement therapy with IgG experienced the care they received in their prenatal clinics in relation to PAD and IgG therapy.

Design: An exploratory study using a written questionnaire.

Setting: The study originates from an immunodeficiency unit but evaluates care experienced at prenatal clinics.

Participants: Nine women (25-43 years) attending an immunodeficiency unit and who fulfilled inclusion criteria for simultaneously having PAD, replacement IgG therapy, and full-term pregnancy (the latter within the past 5 years).

Main outcome: Women's perception of the response of midwives and physicians at their prenatal clinics to their PAD and IgG therapy during pregnancy.

Results: Women perceived that the obstetricians and the midwives had insufficient knowledge about PAD and IgG replacement therapy. Two women reported that their IgG therapy during pregnancy had been questioned. All nine women felt marginalized and unheard by staff regarding their PAD and need for IgG therapy. However, the women were satisfied with the checkups regarding the pregnancy as such.

Conclusions: This study is the first attempt to investigate the prenatal experience of women with PAD (Search of PubMed, 1980 to present, including search terms primary immunodeficiency, pregnancy, and prenatal care). This study demonstrates that increased knowledge about PAD and IgG replacement therapy among midwives and physicians working in prenatal care clinics is needed. This can prevent misleading advice that puts the health of the mother and her fetus at risk. Sensitizing staff about this special group of women can create conditions in which women feel respected, heard, and satisfied with their prenatal care.