Young ICD Connection: The 2008 Annual Conference

October 17 and 18, 2008 marked the 12th annual University of Michigan Hospital’s Young ICD Connection Conference. This annual conference, presented by the University of Michigan’s Cardiovascular and Congenital Heart Centers, provides a venue for young ICD recipients and their families to come together for the purpose of support, education, and the opportunity to meet and connect with others who share similar experiences. Due to the small population of young ICD recipients per geographical area, the sense of isolation experienced by these young implanted patients and their family members was becoming more evident. Recognizing the value of a conference that would bring these patients together for the purpose of exchanging ideas, receiving education, and addressing psychosocial issues, Sarah LeRoy, NP from the U-M Congenital Heart Center with Theresa Davidson, RN, BSN and Laura Horwood, NP from the U-M Cardiovascular Center, developed and led the first conference of this type in 1996. Prior to this, ICD support groups had generally been geared toward adult ICD recipients, and failed to meet the unique challenges and issues that children and young adult ICD recipients face. The model for the Young ICD Connection Conference was presented at the 1997 annual NASPE (now HRS) meeting, in the hopes it would serve as a model for other providers nationally. As in past years, the 2008 conference was held at the Marriott Resort in Ypsilanti, Michigan. Theresa Davidson, RN, BSN explained the reason behind holding the conference at a local hotel: “When developing the concept of the Young ICD Connection Conference, we wanted to hold it at a place where young ICD recipients would feel safe, away from hospitals, in a festive environment that would promote social interaction. This conference allows our young patients an opportunity to meet with peers who are facing similar challenges and fears, as well as gives them the ability to share concerns and triumphs in a supportive atmosphere.” A highlight of each year’s conference has been the patients’ willingness to share their perspectives as an ICD recipient to the group at the beginning of the conference. This year proved to be no exception, as five young ICD recipients and one parent addressed the group with varied stories that held a common thread of living life with an ICD as well as the risk of sudden cardiac death. One young woman who has been involved in mission work described how she had looked forward to having an ICD implanted, as it would allow her the freedom to travel to other countries without the worry of an unprotected event. Each patient shared unique insights into not only coping with life-threatening heart disease and ICD implantation, but stories of triumph and growth from the experience. Following the patients’ perspectives, the group is invited to attend break-out support sessions tailored to their individual needs. Sessions are available for women with ICDs, men with ICDs, teens with ICDs, parents of children with ICDs, and spouses and significant others. A physician and nurse join each group to be available for questions. A “Connect with the Experts” panel continues to be a popular session at the conference. This year, University of Michigan electrophysiologists Frank Pelosi, MD and David Bradley, MD were available to answer questions that attendees had regarding devices, lead and device recalls, and other important issues. Other guests on the panel included a social worker, device clinic nurse, pharmacist, device company representative, and an ICD recipient who also serves as a peer counselor. A parent who attended the panel discussion gave the following feedback: “We really would like to see the panel repeated at next year’s conference. We appreciated being able to ask all the little questions we’ve always wanted answers to.” This year’s conference agenda included the following educational sessions: • Genetic Testing for ICD Patients: Who’s Your Daddy? (Presenter: David Bradley, MD) • The Role of ICDs in Congenital Heart Disease (Presenter: Timothy Cotts, MD) • The Role of ICDs in Ischemic and Non-Ischemic Heart Disease (Presenter: Frank Pelosi, MD) • Home Monitoring for ICDs (Presenters: Corey Ryder, CVT and Sue Honoway, Medtronic, Inc.) Sessions for relaxation and socialization included yoga, art therapy, an adventure in team building for children and teens, a “contagious optimism” presentation, and entertainment by a magician. Therapaws, a canine-assisted therapy program, had volunteers available throughout the day at the program. A reception following the conference included a DJ with dancing and karaoke, offering fun and enjoyment for all. Educational materials were made available at booths throughout the conference from groups such as the Sudden Arrhythmia Death Syndromes (SADS) Foundation, the American Heart Association (AHA), and the Hypertrophic Cardiomyopathy Association (HCMA). A representative from Parent Heart Watch also attended to relay the important work the group is doing to bring AEDs into the schools along with the education for their use. Each year the attendees are asked to complete an evaluation of the program with suggestions for improvements or topics they would like to see presented at next year’s conference. Feedback received from one young woman stated, “I look forward to coming to the conference each year. It is nice to meet others who have the same concerns and issues I have. It helps me to feel I am not alone in this.” University of Michigan device clinic nurse practitioner Laura Horwood, who has been with the program since its inception, adds, “The Young ICD Connection is a wonderful program for our young adult ICD recipients. For patients whose ages range from 20 to 40+, our traditional monthly patient and family support group program does not address their age-appropriate issues and concerns. The Young ICD Connection also provides a unique opportunity for patients and family members with similar situations to form special relationships. For many, these relationships are vital to their successful adjustment to living life with an ICD. Our program continues to be a very successful support group program and the first of its kind in the country. Each year, we have attendees who travel from all over the United States. The positive feedback and continued attendance demonstrates the significance of this experience for these young individuals and their families.” Another positive aspect that has arisen from the Young ICD Conference is the greater understanding of our patients’ needs and insight into life with an ICD by our medical staff. Nurse volunteers from our Cardiac Intensive Care and Step-down Units have relayed their appreciation of attendance at the conferences, as it has helped them to better understand ICD patients’ concerns and also to be better educators when taking care of ICD recipients. Dr. Pelosi, a U-M electrophysiologist and Director of the EP Fellows program, recommends that EP fellows attend and participate at the conference. According to Dr. Pelosi, “The Young ICD Program has taught me and our fellows that caring for patients with implantable defibrillators does not stop after the implant. This program has made us better doctors as we consider the impact of these devices in our patients’ lives.” We look forward to the continuance of The Young ICD Connection Conference, which supports our hospital’s mission of “Patients and Families First.” Next year’s Young ICD Connection Conference will be held in October of 2009. This conference is made possible with support from an educational grant from Medtronic, Inc. If you would like further information regarding this conference, please contact Helen McFarland, RN, at: hmcfarla@med.umich.edu.