A new study shows young adults with congenital heart disease (CHD) also living with an implantable cardioverter- defibrillator (ICD) experience a high level of shock-related anxiety. The multicenter study, published in the June edition of HeartRhythm,the official journal of the Heart Rhythm Society, is the first to discover that shock-related anxiety is associated with sexual dysfunction in young adults and calls on healthcare providers to address these issues to improve the quality of life for patients.
Congenital heart defects are one of the most common types of birth defect and the number of adults living with CHD continues to grow. In 2000, the number of adults with congenital heart disease in the United States was estimated to be between 650,000 and 1.3million , and this number increases each year. Therefore, an increasing number of adults with CHD are receiving ICDs as the primary or secondary prevention therapy against sudden cardiac death (SCD). Although life-saving benefits of ICD therapy in carefully selected candidates are well established, psychological effects of living with an ICD can be considerable.
Patients in this study were prospectively enrolled from four adult CHD outpatient clinics within the Alliance for Adult Research in Congenital Cardiology. The Florida Shock Anxiety Scale (FSAS), a 10-item tool designed to provide a quantitative measure about the ability to cope with the impact of a shock, was administered to patients with an ICD. Men completed the Sexual Health Inventory for Men (SHIM), a questionnaire for screening and diagnosing erectile dysfunction and its severity. Additionally, women completed the Female Sexual Function Index (FSFI), a self-report questionnaire that assesses sexual function in women in a variety of dimensions.
A total of 180 patients (70 patients with an ICD, 110 patients without an ICD) and an average age of 32 years old were enrolled in the study. In ICD recipients, a high level of shock-related anxiety was identified, which was slightly higher than the median score for ICD recipients in the general population revealing a high level of device specific fears and anxiety. A higher level of shock-related anxiety was associated with poorer sexual function score in both men and women.
“ICDs are increasingly being implanted in this young and vulnerable patient population, yet the psychosocial issues are often overlooked. Our study is an example of dynamic research intended to help us better understand this growing population,” stated lead-author Stephen Cook, MD, Adult Congenital Heart Disease Center, Heart Institute, Children’s Hospital of Pittsburgh of University of Pittsburgh Medical Center. “Improving outcomes and the quality of life in these young adults is critical and our results clearly show the importance of addressing their psychological well-being.”
Early identification of shock-related anxiety may pave the way for targeted interventions such as educational initiatives, treatment planning and psychological referral. Despite the overall access of ICDs in preventing premature mortality in at-risk patients, the psychological cost of living with an ICD can be significant. Proposed strategies to improve psychological well-being should include an effective communication strategy between patients and health-care professionals in regarding education and sexual concerns.
 Marelli AJ, Gurvitz M. From Numbers to Guidelines. Prog Cardiovasc Dis. 2011; 53: 239-246