Just ask Ed Burns, of Ocala, who received an implantable cardioverter defibrillator, or ICD, five years ago. The uncertainty of when or if the device would fire made him wary of driving long distances. Before setting out on a road trip to California to visit family, Burns researched and made a list of every medical center along the route that could treat ICD patients.
Now a new tool from the University of Florida can help health-care providers identify which patients may need psychological services to cope with anxiety. It's called the Florida Shock Anxiety Scale, and UF researchers report on its effectiveness in the current issue of Pacing and Clinical Electrophysiology.
The research was done as part of a continuing series of investigations on ICD recipients' psychological health led by Samuel Sears, Ph.D., an associate professor in the department of clinical and health psychology at the UF College of Public Health and Health Professions, and Jamie Conti, M.D., an associate professor in the College of Medicine.
"Patients with an ICD can have unique fears that separate them from people with other general anxieties," said Emily Kuhl, the study's lead author and a doctoral candidate in the department of clinical and health psychology.
The ICD is a battery-powered device that constantly monitors the patient's heartbeat and delivers a 750-volt shock to restore normal rhythm if it senses a dangerous rapid rhythm developing. Approximately 150,000 patients worldwide received an ICD in 2004, according to researchers at the University of Marburg in Germany.
Patients' concerns about ICDs recently gained national attention after manufacturers recalled 109,000 defibrillators last year. Device flaws have been linked to at least seven deaths.
Patients with an ICD may be afraid that if the device fires they may harm themselves or others, or create a scene. Or they may be fearful that certain activities, such as exercise or sexual activity, might trigger a shock, Kuhl said.
Research has shown that 10 percent to 38 percent of ICD recipients will experience a shock within the first year of receiving the implant. The sensation is often described as feeling like a kick in the chest.
"Patients usually describe a shock as a six on a pain scale of one to 10," Kuhl said. "A shock is not so much painful as it is surprising. Chances are that a shock won't interfere to the point that a patient is unsafe to drive or care for children."
To test its effectiveness, UF researchers administered the Florida Shock Anxiety Scale, a written questionnaire developed with help from doctoral students Robyn Walker and Neha Dixit, to 72 ICD recipients. The patients rated the frequency of anxious thoughts, such as "I am afraid of being alone when the ICD fires and I will need help" and "I am afraid to touch others for fear that I will shock them if the ICD fires."
Researchers analyzed participants' responses and determined that the scale evaluates the correct underlying anxiety concepts and proved highly reliable.
"We knew we had a reliable measure on our hands that could be potentially a great tool for health-care providers," Kuhl said.
Next they plan to test the anxiety scale with a larger number of patients and measure it against other anxiety assessment tools.
"We also want to get the Florida Shock Anxiety Scale into the hands of health-care providers so they use it, understand it and realize how important it is," Kuhl said, adding that psychological treatment for ICD patients is not standard care in the United States.
Burns said patient education was key to helping him overcome his fears after he received his ICD.
"Now I know what an ICD is and what it does, and I'm not the least bit concerned," Burns said. "You learn to live with the ICD and it becomes part of your body."
Sandra Dunbar, D.S.N., the Charles Howard Candler professor of nursing and cardiology at Emory University and an international expert on quality of life after ICD, said that research has shown a wide variety of patient responses to living with an ICD.
"The FSAS is a welcome tool for clinicians and researchers who are trying to determine which patients are at greatest risk for psychosocial distress and what interventions might work," Dunbar said. "Of particular merit is the potential ability of clinicians to use the tool to tailor care for particular patient concerns. This should ultimately lead to more individualized and cost-effective care."
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