Guilt and Reproductive Decision Making in Patients Inherited Cardiac Diseases

Abstract Background A diagnosis of an inherited cardiac condition may cause guilt for having the condition (i.e. personal guilt), for passing it to one’s offspring (i.e. reproductive guilt), and may also impact the reproductive decision-making. We sought to identify factors that are associated with guilt and reproduction decision-making amongst patients with inherited cardiomyopathy and arrhythmia syndromes. Methods We used an anonymous web-based survey that included validated measures to assess patients’ perceptions of their illness and quality of life and questions on feeling personal guilt and reproductive guilt, genetic testing results, family planning, and cascade screening. Results Of 514 potential participants, 128(24.9%) responded to the survey. Most respondents had cardiomyopathy(66.4%). Thirty-eight(29.6%) respondents were probands and 41 (32.0%) had ICDs. Probands had a more severe perception of illness score compared to non-probands(p<0.01). Thirty-four percent(13/38) of probands and 8.8% (8/90) of non-probands reported reproductive guilt(p<0.001). Reproductive guilt was associated with a more severe perception of illness(p<0.001) and a proband status (p=<0.001). After adjusting for illness perception, being a proband was no longer a predictor for reproductive guilt. Twenty-two participants (17.2%) reported experiencing current or past personal guilt, with a trend of more personal guilt amongst patients with inherited arrhythmia (33.3%vs.15%,p=0.06). Personal guilt was associated with a worse illness perception (p<0.001), a lower quality of life (p=0.01) and proband status (p<0.001), with thirty-four percent (13/38) of probands vs. ten percent of non-probands (9/90) (p<0.001) feeling or having felt personal guilt. After adjusting for quality of life and illness perception proband status did not remain an independent predictor for personal guilt. Conclusion Personal and reproductive guilt are common among individuals with inherited cardiac conditions despite having good quality of life. Probands are more prone to feeling guilt due to a worse illness perception. Better opportunities for psychologic and genetic counseling for these patients are warranted.