By Ian Law, MD, Jean Gingerich, RN, BSN and Nicholas Von Bergen, MD

For those who have had the privilege of caring for children and young adults with life-threatening heart disease requiring ICD implantation, you are well aware that much of the emotional impact of the ICD occurs after device placement.

Pediatric ICD implants account for less than 1% of devices; however, with advancements in device technology, increasing genetic testing availability (potentially increasing the number of primary prevention implants) and increased longevity of young adults with congenital heart disease, the number of pediatric and young adult patients with ICDs is growing substantially. ICD placement in pediatric patients results in unique psychosocial issues not typically seen in adults, including: living with a life-threatening illness, adjusting to a scar and “bulging” device (which may serve as a constant reminder of their heart disease and can have a dramatic impact on body image), and at times dealing with the loss of a family member. This occurs at the time when they are trying to develop social independence and a sense of self. For many, ICD placement leads to fear of peer rejection, altered body image, and concern of inappropriate or appropriate shocks. This fear may limit exercise, other activities, or result in fear of being separated from their “safety net” such that they may not return to school or go out with their friends. As they enter into early adulthood, their concerns turn to fear of intimacy, marriage, child-bearing and in general, fear of the unknown.

These unique concerns have lead us to proactively address the psychosocial and physical impact of ICD implant, including spending a significant amount of time discussing the disease process and ICD implant, answering questions, giving the patients and families educational packets, and often setting up an appointment with a psychologist who is knowledgeable about ICDs and their impact on the patient.

The diagnosis of life-threatening cardiac disease and placement of an ICD affects not only the patient, but the patient’s family and other loved ones. In many instances, the first indication that a patient (or family) has a life-threatening cardiac disease is following an aborted sudden cardiac arrest in their child. The ICD becomes a sign of poor prognosis, significantly altering the patient’s and families’ outlook on life. We have found one of the best methods for the affected individuals to gain acceptance and develop lifelong strategies to cope with their disease and ICD placement is to interact with others who are sharing similar experiences. This is especially important to children and young adults, who can feel so incredibly isolated.

In addition, we have found that minimizing the physical appearance of the ICD placement can greatly accelerate the acceptance process. Showing a child an ICD generator can be instructional but very frightening, whereas showing a child a photo of another patient who has undergone ICD placement who is smiling or playing with their friends may alleviate many of their fears. Another seemingly minor step that leads to device acceptance is relocating the incision site for generator implant from the typical pectoral area (subclavian) to a more lateral site. We preferably make the incision for ICD generator placement along the anterior axillary line, and in thin individuals, place the generator under the pectoral muscle (Figures 1-3). Showing photos of patients with an axillary scar wearing a bathing suit or tank top can lead to a tremendous sense of relief in a patient who is scheduled to undergo ICD placement. Currently we are in the process of designing a study with Dr. Kathryn Collins (Denver Children’s Hospital) investigating the psychosocial impact of scar location in children and teenagers using quality of life surveys. We look forward to the results of this study as the data is gathered.

In our article this month in the July 2010 issue of EP Lab Digest, we discuss our techniques for helping these patients and their families, including information on our annual patient conference.

Ian Law, MD, Jean Gingerich, RN, BSN and Nicholas Von Bergen, MD are located at the University of Iowa Hospital and Clinic in Iowa City, Iowa.