Differences in the experiences and perceptions of men and women with congenital heart defects: A call for gender-sensitive, specialized, and integrative care

Background Although there is sufficient evidence that sex-/gender-based differences can influence treatment decisions and healthcare for adults with congenital heart disease (ACHD), there are major research shortfalls in this regard. The aim of this study was to assess these in a large ACHD cohort. Methods In this cross-sectional study, patient-reported outcome measures from a questionnaire completed by 3880 ACHD (53.6% female; 41.9 ​± ​17.1 years) were used to assess gender-related differences concerning underlying CHD condition, comorbidities, health care details, individual counselling needs, and quality of life (QoL). Results Significant differences observed included a female predominance in tetralogy of Fallot, atrial septal defects, and persistent ductus arteriosus, and a male predominance in aortic valve stenosis/insufficiency and transposition of the great arteries. The prevalence of coronary artery disease was significantly higher in men, while women reported a higher prevalence of pulmonary hypertension, arrhythmias, neurologic restrictions, and overall comorbidities. Men consulted their primary care physician more often if a CHD-related medical problem was suspected. A total of 2194 patients (54.4% female) stated that they had never been referred to an institution specialized in CHD. Both sexes had a high counselling demand, but there were significant differences between male and female participants. In terms of QoL, female participants reported greater impairments, especially in everyday activities, more pain/physical complaints, and more anxiety/depression. Conclusion Both specialists and primary care physicians (PCPs) require an understanding of the importance of gender-based differences in ACHD, since, for the majority of ACHD, PCPs are the first contact persons for medical issues.