A Call for Sex-Sensitive, Specialized, and Integrative Care in Adults with Congenital Heart Defects

Objectives: Around 1.2 to 2.7 million adults with congenital heart disease (ACHD) are expected to live across Europe. Although there is evidence, that sex-differences can influence treatment decisions and medical health care in ACHD, there are major research shortfalls in this regard. Therefore, the aim of the present study was to assess and evaluate sex-specific differences in a large ACHD cohort.

Methods: In a cross-sectional study, sex-related differences concerning the underlying congenital heart defect (CHD), comorbidities, the medical health care situation, individual counseling needs, and quality of life (QoL) were assessed by patient-reported outcome measures (PROMs).

Result: The survey included 1,597 ACHD (53.1% female; 37.5 ± 13.1 [18–86] years). Significant differences were observed concerning the patient-reported sex distribution with a female predominance in the tetralogy of Fallot, atrial septal defect, and Ehlers–Danlos syndrome and a male predominance in coarctation of the aorta and aortic valve stenosis/insufficiency (all p ≤ 0.001). Females reported a higher prevalence of comorbidities overall, pulmonary hypertension, arrhythmias, and neurologic/mental restrictions (p < 0.05). Male patients with CHD consulted their general practitioners (GP) more often than women, if a medical problem concerning the CHD was suspected (52 vs. 48%; p < 0.001). A total of 772 patients (403 female) stated that they had never been referred to an institution specialized in CHD. Overall, 36% of all respondents had no awareness of CHD specialized institutions (no sex differences). Both sexes had a high counseling demand with significant sex differences. In terms of QOL, women reported greater impairments than men, especially in the dimensions of everyday activities, pain/physical complaints, and anxiety/depression (p < 0.001). This resulted in a generally lower perceived QOL in women (77.0 ± 18.1) than men (79.3 ± 16.4; p = 0.01).

Conclusion: There are major gender differences in ACHDs. Based on the PROMs, sex differences in diagnosis, comorbidities, medical care, counseling needs, and QOL must be considered in future medical treatment. In addition, not only CHD specialists, but also GPs must be sensitized about the importance of sex differences in ACHD, since they are the first contact persons when it comes to medical questions for the majority of ACHD, especially for men.

No conflict of interest has been declared by the author(s).

Publication History

Article published online:
21 February 2021