Patient perspectives on clinician-patient partnerships to achieve comprehensive pregnancy care in adult congenital heart disease

Background: Because adverse events are more common than in the general population, pregnancy is a high-risk experience for some patients with adult congenital heart disease (ACHD). Guidelines for pregnancy are based on published literature, informed by adverse clinical outcomes with less priority given to patients' lived experiences. This study aims to describe ACHD patients' expectations for and experiences with pregnancy, including factors that influenced patients' perceived quality of care." Methods: We conducted a qualitative study of 25 patients who received care between 2010 and 2019. Purposive sampling was used to gain diversity in ACHD lesion complexity, race, age at pregnancy, and marital status. Semistructured telephone interview data were analyzed using thematic analysis. Results: Mean age at pregnancy was 29 years (range 15-41 years), and 84% had more than one completed pregnancy. ACHD was simple in six participants (24%), moderate in 11 (44%), and complex in eight (32%). Participants' perceptions of pregnancy care were influenced by their experiences in four domains: 1) their existing expectations, derived from prior clinicians' counsel and from observations of others' pregnancies; 2) clinicians' ability and willingness to partner with the patient to address their individual needs, including pre-pregnancy testing, pregnancy education, and planning for birth and delivery; 3) clinicians' recommendations that account for logistical reality and patients' unique life situations; and 4) the importance of clinician confidence and communication in providing care for patients with ACHD. Conclusion: To achieve positive pregnancy outcomes, ACHD patients favor partnerships with clinicians centered on education, realistic recommendations, and good communication.