Targeted Literature Review to Explore the Patient Experience of Hemolytic Disease of the Foetus and Newborn (HDFN)

OBJECTIVES: Haemolytic Disease of the Foetus and Newborn (HDFN) is a rare red blood cell disorder in which maternal alloantibodies attack the red blood cells of foetuses and neonates. HDFN can have critical outcomes for infants such as anaemia, organ damage or death and may negatively impact maternal emotional wellbeing and psychosocial functioning. A targeted literature review was conducted to identify qualitative patient experience data and determine outcomes of importance to characterise the maternal experience of HDFN.

METHODS: Database searches were conducted in Medline, Embase and PsycINFO in February 2024 to identify qualitative studies, or case studies, reporting the maternal experience of HDFN. Unautomated searching of FDA and EMA websites, reference lists, relevant conference proceedings, patient advocacy group websites, and online forums was also conducted. Identified records were individually reviewed against pre-defined eligibility criteria.

RESULTS: None of the 2101 database records identified were eligible. Limited records (n=6) were identified through unautomated searching: three patient advocacy websites detailing blogs/stories, one survey publication exploring attitudes towards prenatal screening (HDFN subsample), and two conference abstracts detailing qualitative research with a US sample to explore patient experience of HDFN. Anxiety was identified across all six records as a key concept to the maternal experience of HDFN; primarily related to the current pregnancy, but also regarding future pregnancies and family planning.

CONCLUSIONS: While HDFN may cause increased levels of maternal anxiety, it is challenging to discern the additive impact of HDFN-induced anxiety from any existing pregnancy-associated anxiety, which is not uncommon. The true extent of HDFN-related maternal impacts is unknown due to limited published qualitative data, possibly due to the summative challenges of conducting research during pregnancy and in a rare indication. Future qualitative research, in a global sample, is recommended to provide insight into the patient experience of HDFN and identify conceptually relevant outcomes.