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698 PA R T I V / Pathophysiology and Management Disease
DISPLAY 28-10 What is the National ICD Registry?
An ICD registry was established in 2005 to assess and improve care of the patient with an ICD. The national ICD Registry was
developed through a collaboration of American College of Cardiology Foundation (ACCF) and the Heart Rhythm society
(HRS). The registry collects information on ICD implants and was established after the 2005 decision by the Centers for
Medicare and Medicaid services (CMS) to expand Medicare coverage of ICDs based on results of the Sudden Cardiac
Death in Heart failure Trial (SCD-HeFT).
The registry was set up to track all Medicare beneficiaries receiving ICDs for primary prevention in the United States.
Hospitals are encouraged to submit data on all patients receiving ICDs, just not Medicare patients. The first year report
showed that nearly 73% of hospitals elected to enter data on all patients receiving an ICD. These were generally the larger
hospitals and accounted for 88% of all ICD implants. During the first year of follow-up, data was collected from 1,318 hos-
pitals in the United States totaling 160,000 ICD implants between April 1, 2006 and July 2007.
The registry has now established a longitudinal ICD registry to determine the rates of ICD therapies (shocks and ATP)
during the first 3 years of postimplant for patients with LVEF 31% to 35% and patients with LVEF 30%. The longitudinal
registry will supply us with up to date information on what type, and how many ICD therapies occur postimplant. This will
provide us with new information to share with ICD patients, particularly those receiving an ICD for primary prevention,
which accounted for 79% of patients in the first year of the National ICD registry. 88

necessarily require an emergent visit to the cardiologist’s office or In the seven studies that did compare QOL with ICD patients to
emergency room. The patient should notify their device following those patients with similar cardiac conditions, the QOL was re-
physician and may be instructed to call in a check with their re- ported to be similar in six studies. The comparison group of patients
mote monitoring equipment (see display remote monitoring). was receiving drug therapy, had pacemakers, or had coronary artery
The ICD shock can be frightening to the patient. The patient disease. In one study the ICD patients reported a higher QOL than
should be reassured that occasional shocks are to be expected and did the patients receiving pharmacological therapy.
reminded that they received the ICD because they are at risk for When ICD patients receive shocks they are more anxious, de-
arrhythmias. pressed, and have poorer QOL than patients who do not receive
Once an appropriate shock has been determined the patient shocks as reported by the AVID investigators. 102 Shock experience is
may need further work-up regarding their clinical condition. certainly a determinate of QOL as Wallace et al. report that the pa-
Often, no cause for the shock is determined and the patient just tients with the lowest anxiety and best QOL post-ICD implant are
needs reassured that the ICD was effective in treating the ar- those who do not receive shocks and have a strong social support. 103
rhythmia. If a patient is having frequent shocks, the electro- HF patients, who have CRT in conjunction with their ICD, have
physiologist may consider adjustments in medications, optimiz- also been noted to have a significant improvement in QOL. 104
ing ICD programming, or proceeding with radiofrequency Sears et al. 96 recently completed the first investigation of a
ablation. 57 stress and shock management intervention for ICD patients, con-
sisting of either a 1-day 4-hour psychoeducational workshop, or a
Psychosocial Issues 6-weeks of 90-minute cognitive-behavioral sessions. The inter-
vention was designed to address the cognitive and behavioral
Anxiety and QOL adaptation to a shock and the following distress that often occurs.
Evidence indicates the ICD patients experience some level of psy- All patients were followed for 4 months after they completed the
chological distress and reduced QOL. After the ICD is implanted, randomized intervention. Physiologic markers (anxiety) and psy-
specific fears and anxiety about the shock experience, device mal- chological markers (salivary cortisol) of distress were measured.
function and/or death are the most common psychological symp- Patients in both groups showed a reduction of anxiety and corti-
toms reported by ICD patients. 96,98,100 ICD system (device and sol levels, and both groups showed a significant increase in patient
lead) alerts and recalls have become stressful events for the ICD acceptance of the ICD. These results suggest that patients can
patient and their families. There is no specific data on how the de- benefit from a cognitive-behavioral strategies and education to re-
vice recalls impact patients. Suggestions have been made to in- duce anxiety after receiving shocks.
clude risk for recalls in the informed consent process as a possible Taking care of the ICD patient can be difficult when they are
adverse event; informing patients that malfunctions are rare and receiving multiple shocks, but can also be rewarding as a special
that they have always occurred and will continue to occur. Pa- nurse/patient rapport develops. Interventions that have been
tients should understand the importance of regular follow-up to shown to help reduce anxiety are ICD education, including having
recognize trends of a possible problem. 101 a set plans with specific instruction for when a shock occurs. Cop-
Thomas et al. reviewed a total of 16 studies that related to ing strategies for the ICD patient after they have received an ICD
QOL and the ICD patients. 98 QOL in ICD patients were re- shock include positive thinking and follow-up debriefing with the
viewed in 14 studies, but only seven were reported to have a stud- device following health care team. 97 Support groups provide a fo-
ied a comparison group. In the seven studies that did not include rum for the patients to discuss their concerns and fears with one
a comparison group, the data were inconclusive and limited. The another and provide the nurse with an excellent opportunity for
98
ICD group led to desirable QOL for most patients in two studies, patient education. Use of programs developed and implemented
did not improve QOL in two studies, varied in two studies de- by nurses may decrease anxiety and depression in the ICD pa-
pendent on NYHA class or age, and worsened QOL in one study. tient. 99 With a considerable increase in patients receiving ICDs,