Alloimmunization in Pregnancy: Patient-reported Quality of Care, Mental Health Effects, and Impact Upon Daily Life.

OBJECTIVE

The purpose of this study was to investigate mental health and impacts upon daily life in patients with a history of pregnancy alloimmunization, and secondarily to examine the relationship between disease severity and quality of care on these outcomes.

STUDY DESIGN

This was a survey administered between November 2022 and February 2023 to U.S. adults with a history of red cell alloimmunization in pregnancy. Mental health outcomes, quality of care, and daily life impacts were reported.

RESULTS

The survey was completed by 127 alloimmunized adults. Anxiety (90.6%), guilt (74.8%), self-doubt (68.0%), isolation (71.4%), depression (68.3%), and symptoms of posttraumatic stress disorder (PTSD) (61.3%) were frequently reported. Mental health support was offered in 24.4%. Respondents reporting a high quality of care in their alloimmunized pregnancies (rating of 8/10 or higher) were significantly less likely than those who perceived receiving lower-quality care to report feelings of guilt (  = 0.0006), self-doubt (  = 0.04), depression (  = 0.03), and symptoms of PTSD (  = 0.001).

CONCLUSION

Despite the pervasive patient burden, mental health support was infrequently offered, and patients reported low satisfaction with continuity of care and their providers' knowledge of alloimmunization. Clinicians interacting with alloimmunized patients must employ a comprehensive patient-centered approach to address the significant disease burden.

KEY POINTS

The impact of alloimmunization in pregnancy on patients' mental health and daily living has not been evaluated.Females with a history of alloimmunization in pregnancy reported widespread anxiety (115/127; 90.6%), guilt (95/127; 74.8%), self-doubt (85/127; 68.0%), isolation (90/127; 71.4%), depression (86/127; 68.3%), and symptoms of PTSD (76/127; 61.3%); mental health support was offered in 24.4% of the sample (31/127). Respondents reporting a high quality of care (rating of 8/10 or higher) were significantly less likely to report feelings of guilt (  = 0.0006), self-doubt (  = 0.04), depression (  = 0.03), and symptoms of PTSD (  = 0.001). This study highlights a need to utilize patient-centered comprehensive care models to support this rare high-risk population. Bolstered clinician knowledge and referral to peer support networks, mental health counselors, and social workers may prove highly beneficial to this patient population.