Caring for the Heartand Mind in ICDPatients

Jessica Ford, MAa, Katherine E. Cutitta, BAa,Lawrence K. Woodrow, MAa, Kari Kirian, MAa,Samuel F. Sears, PhDa,b,*

KEYWORDS

� Implantable cardioverter-defibrillator� Psychosocial functioning � Quality of life

The implantable cardioverter-defibrillator (ICD) isthe premier treatment for patients at risk forsudden cardiac arrest. The successes of clinicaltrials in reducing mortality allow a greater focuson the psychological and patient-centeredoutcomes following implantation with an ICD.Anxiety and/or depressive symptoms are common(ranging from 13% to 48% of patients). Thispsychological morbidity is often related to copingwith a chronic cardiac condition, implantation ofthe ICD, experience or anticipation of defibrillation,and mortality concerns.1 At present, a major focusof patient-centered ICD research is to reducethese negative psychological effects by employingeducational, supportive, and cognitive-behavioralinterventions.2–4 ICD-specific education providedin face-to face settings or electronically on suchtopics as managing arrhythmias, review of medi-cations, ICD purpose and function, return to activ-ities, and symptom and device monitoring havehelped patients understand and accept theircondition.3 Providing social support in the formof nursing contact, patient calls, and supportgroups can reduce psychological distressand improve physiologic functioning.3 Finally,cognitive-behavioral therapy (CBT) has demon-strated effectiveness in decreasing anxiety and

Disclosures: Dr Sears serves as a consultant to Medtronicand St Jude Medical. All funds are directed to East Carolinrarium from Medtronic, Boston Scientific, St Jude Medicareport.a Department of Psychology, East Carolina University, Eab Department of Cardiovascular Sciences, East CarolinaGreenville, NC 27834, USA* Corresponding author. 104 Rawl Building, East CarolinE-mail address: searss@ecu.edu

Card Electrophysiol Clin 3 (2011) 451–462doi:10.1016/j.ccep.2011.05.0101877-9182/11/$ – see front matter � 2011 Elsevier Inc. All

depression in patients who fear their ICD, insteadof embracing it as a source of protection.2,4

Through systematic interventions, the risk ofpsychological morbidity can be reduced in ICDpatients. This article discusses the psychosocialimpact of ICD implantation and shock, risk andresiliency factors of psychosocial distress, recentadvances in psychosocial treatment of patientswith ICDs, and clinical management strategiesthat can be used by electrophysiologists andcardiologists in managing patients with ICDs andpsychological comorbidities.

PSYCHOSOCIAL OUTCOMES POST-ICDIMPLANT AND SHOCK

Psychological adjustment to cardiac conditionsand the implantation of a biomedical device canrepresent a significant stressor that can tax anindividual’s or a family’s coping abilities. Both therecognition of the seriousness of the disease stateand the reliance on the ICD prompt some psycho-logical accommodation of its meaning and impact.Despite advances in ICD technology, patients maystill have difficulty adjusting to life with an ICD. Infact, as many as 24% of patients with an ICDreport low treatment satisfaction,5 prompting

and has or has had research grants from Medtronica University. Dr Sears also has received speaker hono-l, and Biotronik. No other authors have disclosures to

st Fifth Street, Greenville, NC 27858, USAUniversity, East Carolina Heart Institute, Heart Drive,

a University, Greenville, NC 27858.

rights reserved. cardiacEP.th

eclinics.com

Ford et al452

further investigations of patient-centric outcomes.Normative concerns of ICD patients often ad-dressed in cardiac clinics are wide ranging butcan include reliance and acceptance of livingwith technology,6–8 coping with shock andstorm,8,9 body image concerns,10 dealing withrecall,11,12 and sexual dysfunction.13–15 Theseconcerns may affect device acceptance, whichcan be defined as understanding and psychologi-cally accommodating the advantages and disad-vantages of having an ICD, in addition to derivingbiomedical, psychological, and social functioningbenefits from the ICD.7 Device acceptance isimportant because those ICD patients with highdevice acceptance are also more likely to havegreater quality of life (QOL) than ICD patientswith low device acceptance.6 Patients with lowerdevice acceptance are also more likely to havesymptomatic heart failure, type D personality,anxiety symptoms, or depressive symptoms.Device acceptance is also lower in the elderlyand in patients without partners.16 These concernsor low device acceptance may result in feelings ofdistress or anger. Even these normative emotionalresponses have been shown to induce arrhythmo-genic T-wave alternans.17,18 Above and beyondnormative concerns and emotional experienceare more acute psychological comorbidities suchas anxiety and depression. Methods of addressingnormative concerns and prophylaxis of psycho-logical comorbidity are discussed in further detailin the section “Clinical management of criticalevents.”

Anxiety

General or ICD-specific anxiety as a psychologicalmorbidity presents itself in 13% to 38% of ICDrecipients.19–21 Recent longitudinal assessmentof anxiety over the course of the first year of ICDimplant indicated that approximately 35% ofpatients at baseline reported significant anxiety,while approximately 15% of patients reportedanxiety at 6-month and 12-month follow-upwithout any specific treatment.22 In another longi-tudinal study, the chronicity of anxiety in defibril-lator patients was further supported, with 54% ofpatients anxious at implantation still clinicallyanxious at 12 months.23 Anxiety is associatedwith avoidance of activities as means of “playingit safe,” which can reduce the ICD patient’sengagement and enjoyment in life. At some level,anxiety is a reaction to the “threat of loss” of func-tional independence or QOL, and that descriptionfits well here. Self-reported anxiety has also beenlinked to self-reported general health in ICDpatients.24 Anxiety has been found to increase

the likelihood of mortality and cardiovascularevents in patients with heart disease.25,26 For theICD patient, anxiety may also be particularlyfocused on shock anxiety rather than on moregeneralized anxiety foci.27

Anxiety reactions are understandable given thatICD patients have perhaps already faced a near-death experience or have certainly had to facenews of their high risk for sudden cardiac death.Recently, the posttraumatic stress disorder(PTSD)-ICD connection was demonstrated to beprevalent, distressing, and potentially deadly.Ladwig and colleagues28 found that 20% of ICDpatients reported significant PTSD symptoms,which summated to a 3.2-times greater likelihoodof mortality within 5 years compared with ICDpatients with no to moderate symptom levels ofPTSD, even after controlling for cardiac diseaseburden, age, and sex. These data provide furthersupport for expanding the cardiac clinic focus topsychosocial functioning in ICD patients.

Depression

Significant depressive symptoms manifest acrossall cardiac patient populations and affect between18% and 33% of ICD patients.29,30 Some haveeven noted this prevalence to be as high as41%.19 The shock experience has been comparedwith “learned helplessness.” Repeatedly experi-encing negative events (eg, cardiac arrest,myocardial infarction, heart failure diagnosis, defi-brillations, ICD storm, recall) creates a reduction inpatients’ belief in their ability to cope and attemptsto manage illness.31,32 Depressive symptoms mayalso mark risk for increased shock. The Triggers ofVentricular Arrhythmias (TOVA) study examinedbaseline depressive scores and their prospectiveclinical impact (N 5 645). Rates of depressionwere approximately 18%, and the depressedgroup was more likely to receive shock andreceive a shock sooner in the follow-up period.30

Depressive personality features have also beenexplored and posited as the type D personality.Individuals with type D personality traits havea tendency toward worry, gloominess, and socialinhibition, which are associated with higher ratesof depression.33 In a set of 371 ICD patients,type D personality was found in 22.4% of thesample.34 In addition to being associated withdepression in patients with ICDs, type D person-ality is also associated with chronic anxiety inthese patients.23 Those patients with anxiety andtype D personality traits are at greater risk ofventricular arrhythmia (hazard ratio [HR]: 1.89)than other ICD patients.24 Furthermore, patientswith type D personality traits prior to implantation

Caring for the Heart and Mind in ICD Patients 453

with ICD are also at greater risk of mortality at2-year follow-up (HR: 2.79) than patients who didnot endorse these personality traits.34

In summary, the psychosocial functioning of ICDpatients is increasingly well studied and hasdemonstrated significant impact in key medicaland patient-centric outcomes such as shock.30

This aspect is especially important given thatappropriate and inappropriate shock have beenassociated with increased mortality.35

RISK AND RESILIENCY FACTORS FORPSYCHOSOCIAL DISTRESS

Stratification of psychosocial risk has beena research focus because access to specialtymental health services such as a cardiac psychol-ogist is not common. This section reviews riskfactors that can be used to help identify patientswho may be in need of specialty services.

Demographic Factors Predicting Adjustmentto ICD Implantation

Demographically, women and patients youngerthan 50 years tend to be at greatest risk for devel-oping psychological problems following ICDimplantation or shock.16,36 Young ICD patientsmay view their cardiac condition as “age inappro-priate” and disruptive to more aspects of daily lifeincluding key periods of developmental, social,and familial processes.37 For example, amongpatients younger than 40 years with ICDs 63%have concerns about clothing fit, 75% haveconcerns about their ability to socialize with theICD, and 50% have concerns about the ICD’simpact on sexual activity.38 In addition, youngerpatients tend to have the greatest decrease insocial support following ICD implantation.39,40

Lower social support is also a predictor of anxietydevelopment in ICD patients.41

Women, specifically those younger than 50years, also have greater difficulty adjusting toICD implantation.36 In women, body image isa significant concern due to the visibility of theimplant and scar. Some electrophysiologistshave attempted to reduce these concerns withsubmammary implantation of the device.10 Also,somatosensory amplification, or a tendency tofocus on bodily sensations and appraise them asabnormal, tends to be higher in women and hasbeen found to mediate the sex differences inanxiety levels of patients with defibrillators.42

Additional concerns facing women with ICDs arerole reentry, concerns about child bearing androutine mammograms, and sensitivity of breasttissue during recovery.43 Collectively, womenhave specific needs related to coping with their

device. Women have benefited from customizedpsychosocial treatment.44

Device-Triggered Factors PredictingAdjustment to ICD Implantation

Multiple reviews on the QOL outcomes of ICDpatients are now available.45–48 The results gener-ally suggest that ICD patients have QOL reportsat least equal to, if not better than patients treatedwith antiarrhythmic medications. In addition,patients receiving biventricular pacing or cardiacresynchronization therapy via their ICD have alsobeen shown to have improvements in attentionand information processing.49 However, thesediscussions have generally focused on the impactof shock on QOL. Recently, Pedersen andcolleagues50 reviewed the sizeable 7 primary orsecondary prevention trials that assessed QOLand suggested that the existing evidence doesnot universally implicate ICD shock as a QOLspoiler. In short, they suggest that the researchevidence of the negative impact is mixed whenmeasured with generic QOL instruments, andinstead point toward the need for greater attentionto individual factors such as personality, psycho-logical distress, anddevice-specificQOLmeasure-ment. In an accompanying editorial, Sears andKirian51 suggested that ICD shocks remain a “crit-ical” event, because they are a significant “clinical”event thatwarrants expert handling tomakeadjust-ments medically and psychologically. Regardless,shock remains a focus for patients and providersand was the subject of recent American and Euro-pean articles suggesting comprehensive man-agement spanning medical and psychologicalcare.52,53 Despite questions regarding the impactof one defibrillation, there is a substantial amountof evidence that patients who experience greaterthan 5 shocks or a shock storm have lower QOLand greater emotional distress.54–59 In addition topain, following defibrillationmany patients becomehypervigilant to internal physiology, avoid activitiesthey associate with the shock experience, and cat-astrophize the meaning of the defibrillation (eg,associating defibrillation with increased potentialfor future defibrillations or worsening of cardiaccondition), resulting in a cycle of diminishing QOL.4

Factors Predicting Resiliency Following ICDImplantation

Beyond the characteristics predicting maladjust-ment, resiliency factors have also been identifiedthat are likely to increase the ability to cope withthe demands of living with an ICD. Specifically,optimism has been found to buffer against reduc-tions in QOL.60 In fact, among 88 patients

Ford et al454

implanted with ICDs, those with more optimismprior to surgery had greater subsequent mentalhealth and social functioning at 8-month and 14-month follow-up than those lower on the person-ality trait. In addition, ICD patients with greaterlevels of positive health expectations before thesurgery reported greater satisfaction with theiroverall health than those with lower positive healthexpectations. Characteristics specifically targetedin most CBTs have also been found to bufferagainst psychological distress, including copingstyle and the patients’ appraisal of their ability tocope with the challenges of living with an ICD.61

Specifically, problem-focused coping style andlow threat and challenge appraisal were signifi-cantly predictive of having less total mood distur-bance. Mood was significantly predictive offunctional status at 3 months after surgery.Appraisal of control over cardiac condition, copingresources, and the effects of the ICD on thepatient’s social world are also predictors ofresilience.61

Overall, patients who are young (<50 years old),are female, have a premorbid psychiatric diag-nosis, have inadequate social support, or havea history of receiving greater than 5 defibrillationsare most likely to experience psychologicaldistress. For quick reference, Table 1 presentsthe research-indicated risk and resiliency factorsfor developing psychological sequelae followingICD implantation or shock.Although these general risk factors for psycho-

social distress may be helpful in identifyingpatients in need, they are neither sensitive nor

Table 1Risk and resiliency factors in patients withimplantable cardioverter-defibrillators

Risk Factors Resiliency Factors

� Age <50 years� Female gender� Shocks, especially

if >5� Premorbid

psychologicaldifficulties

� Low social support� Poor

understanding ofcondition anddevice

� More severemedical condition

� Optimism/positivehealth expectations

� Problem focusedcoping orientation

� Low appraisal ofthreat of the ICD

� Social Support� Patient-providerrelationship

� Family/caregivers� Faith in ICD and

doctor� Informed about

cardiac conditionand device

� Active lifestyle ofwork/recreation

specific enough to rely on completely. Knowledgeof the symptoms of anxiety, depression, andPTSD, and the way these symptoms present inICD patients, can be applied to assist in clinicaldecision making. Table 2 shows symptoms ofanxiety, depression, and PTSD according to theDiagnostic and Statistical Manual of Mental Disor-ders (Fourth Edition, Text Revised) (DSM IV-TR)62

and ways these symptoms may present in anICD patient. Assessment using ICD-specificmeasures of device acceptance, adjustment,QOL, and psychological distress can provide addi-tional data points from which to determine the bestcourse of action in ICD patient care.43

CLINICAL MANAGEMENT OF CRITICALEVENTS TO IMPROVE QUALITY OF LIFEIN PATIENTS

Psychosocial functioning ICD patients can be ad-dressed in clinical encounters. Following implanta-tion, after the experience of defibrillation, in case ofrecall, and at the end of life are all time points whenimpactful discussion can reduce the likelihood offuture distress.

Perioperative

Following implantation with an ICD, patients mayhave a variety of questions. In addition to curiosi-ties about the device and its function, it is likelythat questions about activity restrictions andchange of social role will arise. Dunbar63 suggeststhat providers deliver information about theimplantation, the device itself, defibrillation, ex-pected psychological responses, and behavioralmethods of preventing arrhythmias to patientswith ICDs and their families in efforts to reducenormative distress related to receiving a device.It is important that early in the patient-providerrelationship a dialog begins in which feeling safe,becoming a survivor rather than a victim, reengag-ing in activities, and bolstering relationship supportare emphasized as key components of physicaland psychological recovery.64

The first goal of communication followingimplantation should be engendering feelings ofsafety. Patients can be reassured that every effortto reduce the potential of defibrillation is beingmade.65 For example, understanding the purposeof antitachycardia pacing, medication usage andadherence, and programming specificities maybe particularly reassuring for patients. Further,taking active steps to help the patient managethe behavioral components of cardiovasculardisease can go a long way in promoting feelingsof control and safety (eg, medication adherence,

Table 2Presentation of psychological distress in patients with implantable cardioverter-defibrillators

PsychologicalDisorder Main DSM IV-TR Criteria Examples of Presentation in ICD Patients

Depression � Depressed mood� Loss of interest or pleasure� Significant weight loss or gain� Insomnia or hypersomnia� Psychomotor agitation or retardation� Fatigue or loss of energy� Feelings of worthlessness or excessiveguilt

� Difficulty concentrating� Recurrent thoughts of death

� Feelings of sadness that they must relyon the ICD or related to severity ofcardiac condition

� Patient reports he or she no longerdesires to participate in recreational orwork activities, due to the ICD“getting in the way” or fear thatothers will ask about/be concernedabout the ICD

Anxiety � Excessive anxiety or worry that isdifficult to control

� Restlessness� Difficulty concentrating� Irritability� Muscle tension� Sleep disturbance

� Frequent worry about cardiaccondition or potential fordefibrillation

� Fidgeting in clinic� Chest pain related to tension in

intercostals

Posttraumaticstress

� Exposure to a traumatic event� With perceived threat of death/serious injury

� Feelings of fear, helplessness, orhorror

� Reexperiencing� Avoidance� Increased arousal� Duration >1 month

� Trauma event:� Sudden cardiac arrest� Surgery� Defibrillation

� Nightmares about defibrillation,phantom shocks, ruminates about theshock

� Avoids places or stimuli associatedwith the shock

� Constantly monitoring bodilyfunctions: always aware of heart rate,periventricular contractions, or anysense of chest pain

Caring for the Heart and Mind in ICD Patients 455

improving dietary habits, increasing physicalactivity, and reducing tobacco use).64

Psychological adjustment can include encour-aging a sense of survivorship. Patients with heartdisease may feel like victims of the disease. It ishelpful to communicate to patients that their deci-sion to protect themselves from sudden cardiacarrest with an ICD indicates strength. Reinforcethat living with an ICD has challenges, but as survi-vors they are well equipped to handle these chal-lenges. Providing patients with tools will helpelicit genuine feelings of survivorship and safety.One such tool is a “shock plan.” The gold-standard plan has 3 recommendations: if thepatient feels fine following a single defibrillationhe or she is encouraged to call the clinic duringbusiness hours; however, if the patient experi-ences a single shock and does not feel well or ifhe/she experiences multiple shocks, he or she isencouraged to seek emergency care.65 Shockplans can be discussed and given as a handoutfor quick reference.

Promoting reengagement in activities can beparamount to patients with ICDs.66 Followingimplantation with an ICD, patients may feel fearfulof overworking their hearts. Substantial evidencesupports referral to cardiac rehabilitation programsas an effective method of engagement.66 Cardiacrehabilitation provides a safe place where patientscan improve not only their cardiac functioning butalso confidence in their remaining physical abilities.In addition, it is important to provide accurate infor-mation and dispel myths regarding what patientsare and are not able to do (eg, arc welding).

Patients can also be encouraged to discuss theICD with their family members and caregivers. En-listing social support is not only beneficial to thepatient, but can reduce the psychological distressof family members. Marx and colleagues found ina sample of 82 family members of ICD patientsthat emotional distress was highest at time ofimplant. Stress during these times of recoveryand adjustment may be assuaged with educationand open discussion.67 “Coping with my partner’s

Ford et al456

ICD and cardiac disease” from the CardiologyPatient Page may be a good resource that canbe provided to patients’ caregivers. In this article,16 strategies are suggested for adjusting to theICD, managing psychological distress, and main-taining relationships.68

Following Defibrillation

The experience of shock can reawaken anxietiesthat had been assuaged following implantation.Following defibrillation, patients often believe thatthey are at greater risk for future shocks. Clinicianscan explain that defibrillation does not alwaysmean a worsening cardiac condition or that thereis greater risk of future shock. It can be helpful todescribe why the patient received the shock (eg,hypokalemia, ventricular fibrillation) and that thisis unrelated to the activity they were engaged inat the time. Often, defibrillation reduces patients’faith in the device and their future. Patients mayneed help to refocus on the fact that living withan ICD shows their commitment to living. Clini-cians can accentuate a survivorship mentalityand remind patients about their tools of coping.Perhaps the most QOL-reducing behavior

following defibrillation is avoidance of activity.Following defibrillation, a classic conditioningresponse is common in patients with ICDs. Avariety of stimuli may be associated with the event;including physiologic arousal (eg, increased heartrate) or external cues (eg, the couch where thepatient was sitting). Some patients begin avoidingthese stimuli altogether, slowly reducing thenumber of activities in which they feel safe.Educating patients about the normalcy of thisreaction, and reassuring them that physical activityor other stimuli that preceded shock are safe, arecrucial.64 Cardiac rehabilitation or repeated stresstest exposures are also helpful in patients who fearthat physical activity will induce a cardiac event.

In the Case of Recall

Device recall is a reality many patients must face.All of the major device companies have had recallsin the last decade.69 Under the threat of recall,many patients overestimate the likelihood that theirdevice could fail. In fact, Gibson and colleagues69

found that 71% of patients undergoing recall over-estimate the probability that the device will fail. Inthis sample, patients also reported feelings ofanxiety (36%), anger (13%), sadness (13%), andfrustration (23%). Studies examining the effect ofdevice recall on general and device-specific QOL,clinical anxiety, and depressive symptoms havebeen inconclusive.11,70,71 However, there isevidence that patients experience anxiety related

to device recall, regardless of whether or not therecall is for their device.12

Patients with ICDs reported significantly moreconfidence in device recall information when thesourcewas their physician or amanufacturer ratherthan the media.12 Keren and colleagues71 con-ducted a survey of 416 ICD patients. Patients inthe advisory group for a recall of Fidelis leads didnot have increased depression, anxiety, shockanxiety, or lower device acceptance than nonadvi-sory patients; unless they experienced inappro-priate shock or lead fracture. Thirty-seven percentof patients with a fractured lead had significantanxiety. This number jumped to nearly 50% if theyalso had inappropriate shock. Depression wassimilarly elevated (43.7%) in patients who experi-enced inappropriate shock. Device acceptancewas also negatively affected by lead fracture andinappropriate shock related to recall.Perhaps the most obvious way to help patients

experiencing recall of a device is clarification ofthe risk associated with recall and generatorchange. As stated before, patients regularly over-estimate their risk.70 Overall, risk of device failureranges from 0.009% to 2.6%, with an average ofa 0.44% risk.72 However, a study of 732 generatorchange outs at the Mayo Clinic in Rochester foundthe risk of complication following surgery to be1.24%. Overall, risk of device failure and surgicalcomplications of replacement are very low.72 Ina study examining the effect of recall, in whichparticipants and their families were debriefedregarding the risk related to recall and given anopportunity to ask questions in addition to indi-vidual meetings with their electrophysiologist,device acceptance was not lower in ICD patientsexperiencing recall.70 In addition, an interventionstudy examined the effects of brief nurse-delivered counseling intended to reduce overesti-mation of risk following recall in 100 patients.73

Worry significantly dropped following intervention,and this reduction in worry was maintained ata 6-month follow-up.

End of Life

Taking care of patients during end of life can bedifficult for patients, families, and physicians. Ac-cording to family members, only 27 of a sample of100 patients at end of life had conversations aboutdeactivating their ICD as they neared death.74 Inaddition, these conversations were often the resultof acute crisis rather than planned discussion.Recently, anexpert consensusstatementwaspub-lished that centeredonmanaging requests forwith-drawal of ICD therapy near the end of life.75 Thestatement provides some clarification regarding

Caring for the Heart and Mind in ICD Patients 457

ethical and religious issues of defibrillator deactiva-tion in various populations. Key discussions aboutend of life should be had at various time points incare for patients with ICDs. Points of discussionregarding end of life throughout the continuum ofcare are integrated in Table 3. It is highly recom-mended that discussions regarding end of lifeinclude patients’ families and caregivers, as theymay potentially become legal surrogates or proxiesin the case that patients are no longer competent tomake their own decisions. Discussion with familymembers and caregivers about end of life, thepatient’s illness, the device, goals of care, anddesired outcomes are also likely to reduce distressin family members that may adversely affect thepatient.

Methods of reducing psychological distress varydepending on the time at which the patientexpresses concerns (ranging frombefore implanta-tion to after electrical storm) and extent of psycho-logical distress. For this reason, a continuum ofcare providing different forms of support atdifferent stages should be in place for patientswho require this technology. Table 3 shows theICD time-point spectrum with associated educa-tion and discussion suggestions.

Using Mental Health Professionals

Should psychosocial adjustment remain difficultfor a patient following discussion of these strate-gies for coping, referral to a mental health profes-sional is the best practice. In a review ofpsychosocial treatments for ICD patients bySalmoirago-Blotcher and Ockene,76 the investiga-tors concluded that overall, CBT is most effectivein reducing anxiety and depression.

Most CBT interventions for ICD patients includeICD-specific education, shock planning, relaxationand stress management techniques, as well ascognitive and behavioral techniques.2,4,77–79

Some of the newer CBT interventions also includesymptom management,80 exercise or cardiacrehabilitation components,81–83 social or groupsupport,4,82–85 coverage of female-specific ICDconcerns,44 and more technological computer-based intervention.85 The majority of theseinterventions focus on ICD patients, but lacka component specifically tailored to the anxietyresponse following defibrillation. Sears’ “Shockand Stress Management Protocol” is one interven-tion, including a specific focus on helping patientswho have experienced shock to regain QOL anddevice acceptance as well as on reducing anxietyabout future shocks.4 Among studies that foundreduction of depression, the majority include anexercise or cardiac rehabilitation component.76

These studies were also shown to significantlyincrease physical functioning. However, smallsample size is a significant limitation of themajorityof these studies. Recently, Lewin and colleagues83

demonstrated that providing patients with infor-mation before and after surgery in addition to 3brief telephone contacts with a trained allied healthprofessional reduced anxiety, depression, limita-tions in physical activity, and health care costs ina large randomized control trial (N 5 192). Collec-tively, there are a variety of evidence-based inter-ventions that have been shown to help a variety ofdifferent groups of ICD patients across thecontinuum of experience related to living with anICD.

Support Groups

Support groups give patients an opportunity toobtain practical information about life with anICD, meet others with ICDs, and secure emotionalsupport.79 Themes of helpful support groupsinclude the exploration of patient perspectivesthrough story telling; triggers that encouragehelp-seeking in the group; provision of meaningfulinformation about what to expect, what’s normal,how and why the device works, and what to doafter shock; group camaraderie; use of an empow-ering expert facilitator; and inclusion of caregiversand support persons.86

Studies examining the effects of patient supportgroups on psychosocial and health outcomes arefew in number, have small sample sizes, and regu-larly lack randomized controls.87–89 However,there has been one randomized control trial exam-ining an intervention including 2 meetings witha support group, telehealth, and in-person indi-vidual meetings with a psychiatric nurse.90 Boththe intervention and control group benefited overtime and the investigators concluded that there islimited additional benefit of support groups forICD patients. These conclusions may be prema-ture because of the relatively small sample size(N 5 34) and small dose of support group treat-ment. Although there is a paucity of evidencethat support groups improve psychosocial orhealth outcomes as yet, the venue of a socialsupport group can be maintained for little cost oreffort and can provide benefit to patients indistress. In fact, Myers and James91 found thatthose with greater anxiety and lower socialsupport self-selected to participate in a supportgroup. Unfortunately, the effect of the group itselfwas not measured. Taken together, the researchregarding support groups is inconclusive.However, there is likely clinical utility in providingthese inexpensive group services.

Table 3The continuum of care: impactful discussion with ICD patients about critical events

Time Point

Perioperative Following Defibrillation In the Case of Recall End of Life

Discussionpoints

Thoroughly cover patients’cardiac condition

Clarify the purpose of the deviceExplain how the device works

(eg, pacing, defibrillation)Create shock planEmphasize safety of activities

while clarifying activities toavoid (eg, arc welding)

Attempt to include family/caregivers

Encourage patients to create anadvanced directive/living will

Inform of potential futuredeactivation if desired at endof life

Emphasize that defibrillation isnot indicative of worseningcardiac condition

Stress steps taken to preventfuture arrhythmias anddefibrillations

Review shock planEncourage reengagement in

activities/situations associatedwith shock

Discuss experience withcaregivers and familymembers if possible

Assess for excessive shockanxiety, lowered deviceacceptance, or traumareaction

Inform patients of recallIf their device is included in therecall, discuss risk of devicefailure and risk of surgicalintervention

Try to reassure and reestablishfaith in the device

Attempt to include families andcaregivers

Explore the patient’sunderstanding of the deviceand his or herconceptualization ofresuscitation

Assist patient in reevaluatingthe benefits and burdens ofthe ICD

Discuss patient’s continuedneeds (eg, continued use ofthe ICD at full capacity,continued pacing withoutdefibrillation capabilities,complete deactivation)

Assess patient’s quality of life,functional status, and need torefer to palliative care orsupportive services

Encourage inclusion of familymembers/caregivers

Ford

etal

458

Caring for the Heart and Mind in ICD Patients 459

SUMMARY

Achieving the full value of the ICD by receivingprotection from sudden cardiac arrest andachieving optimal QOL requires increased system-atic assessment and care-of-patient perspectives.ICD patients are unique because they requiremedical care to control the progression of cardiacdisease as well as psychosocial care aimed at ad-dressing adjustment issues of living with biomed-ical technology. Patients with ICDs have a greaterprevalence of anxiety and depression than thegeneral public.1 Many, even those who do notdevelop a psychological disorder, have concernsabout living with an ICD that requires attentionand care. Normative concerns across the con-tinuum of care can be addressed in the context ofa series of empathic and thorough discussions.64

Additional screening of patients for the risk andresiliency factors of psychosocial distress (eg,age <50, female gender, shock experience),16,36

the use of validated disease-specific measures,43

andevaluatingpatients for the signsand symptomsof psychological distress can help identify patientswhoneedmore support. At present, thebest optionfor these patients is a cognitive-behavioral inter-vention provided by a qualified mental healthprovider.76 Support groups may also be helpfulfor patients learning to cope with life after deviceimplantation.89 Patients with ICDs have the bestmedical treatment available. However, this is onlyhalf of thepicture. Electrophysiologists andcardiol-ogists who work with these patients face the chal-lenge of providing therapeutic care of both theheart and the mind.

REFERENCES

1. Sears S, Conti J. Understanding implantable cardi-

overter defibrillator shocks and storms: medical

and psychosocial considerations for research and

clinical care. Clin Cardiol 2003;26:107–11.

2. Kohn C, Petrucci R, Baessler C, et al. The effect of

psychological intervention on patients’ long-term

adjustment to the ICD: a prospective study. Pacing

Clin Electrophysiol 2000;23:450–6.

3. Matchett M, Kirian K, Hazelton G, et al. Common

presenting psychosocial problems for implantable

cardioverter defibrillator patients: a primer for

consulting professionals. In: Sher L, editor. Psycho-

logical factors and cardiovascular disorders.

Hauppauge (NY): Nova Sciences Publishers, Inc;

2009. p. 331–49.

4. Sears S, Sowell L, Kuhl E, et al. The ICD shock and

stress management program: a randomized trial of

psychosocial treatment to optimize quality of life in

ICD patients. Pacing Clin Electrophysiol 2007;30:

858–64.

5. Ladwig K-H, Deisenhofer I, Simon H, et al. Charac-

teristics associated with low treatment satisfaction

in patients with implanted cardioverter defibrillators:

results from the LICAD study. Pacing Clin Electro-

physiol 2005;28:506–13.

6. Burns J, Sears S, Sotile R, et al. Do patients accept

implantable atrial defibrillation therapy? Results from

the Patient Atrial Shock Survey of Acceptance and

Tolerance (PASSAT) Study. J Cardiovasc Electrophy-

siol 2004;15:286–92.

7. Burns J, Serber E, Keim S, et al. Measuring patient

acceptance of implantable cardiac device therapy:

initial psychometric investigation of the Florida

Patient Acceptance Survey. J Cardiovasc Electro-

physiol 2005;16:384–90.

8. Sears S, Conti J. Psychological aspects of cardiac

devices and recalls in patients with implantable

cardioverter defibrillators. Am J Cardiol 2006;98:

565–7.

9. Kuijpers P, Honig A, Wellens H. Effect of treatment of

panic disorder in patients with frequent ICD

discharges: a pilot study. Gen Hosp Psychiatry

2002;24:181–4.

10. Sowell L, Kuhl E, Sears S, et al. Device implant tech-

nique and consideration of body image: specific

procedures for implantable cardioverter defibrilla-

tors in female patients. J Womens Health (Larchmt)

2006;15:830–5.

11. Cuculi F, Herzig W, Kobza R, et al. Psychological

distress in patients with ICD recall. Pacing Clin Elec-

trophysiol 2006;29:1261–5.

12. Stutts L, Conti J, Aranda J, et al. Patient evaluation of

ICD recall communication strategies: a vignette

study. Pacing Clin Electrophysiol 2007;30:1105–11.

13. Steinke E. Sexual concerns of patients and partners

after an implantable cardioverter defibrillator. Di-

mens Crit Care Nurs 2003;22:89–96.

14. Steinke E, Gill-Hopple K, Valdez D, et al. Sexual

concerns and educational needs after an implant-

able cardioverter defibrillator. Heart Lung 2005;34:

299–308.

15. Vazquez L, Sears S, Shea J, et al. Sexual health for

patients with an implantable cardioverter defibril-

lator. Circulation 2010;122:465–7.

16. Pedersen S, Spindler H, Johansen J, et al. Corre-

lates of patient acceptance of the cardioverter defi-

brillator: cross-validation of the Florida Patient

Acceptance Survey in Danish patients. Pacing Clin

Electrophysiol 2008;31:1168–77.

17. Lampert R. Anger and ventricular arrhythmias. Curr

Opin Cardiol 2010;25:46–52.

18. Lampert R, Shusterman V, Burg M, et al. Anger-

induced T-wave alternans predicts future ventricular

arrhythmias in patients with implantable cardiovert-

er-defibrillators. J Am Coll Cardiol 2009;53:774–8.

Ford et al460

19. Bilge A, Ozben B, Demircan S, et al. Depression and

anxiety status of patients with implantable cardi-

overter defibrillator and precipitating factors. Pacing

Clin Electrophysiol 2006;29:619–26.

20. Griegel L, Black C, Goulden L, et al. Anxiety and

depression in patients receiving implanted cardio-

verter-defibrillators: a longitudinal investigation. Int J

Psychiatry Med 1997;27:57–69.

21. Sears S, Todaro J. Electrophysiology, pacing, and

arrhythmia. Examining the psychosocial impact of

implantable cardioverter defibrillators: a literature

review. Science 1999;489:481–9.

22. Kapa S, Rotondi-Trevisan D, Mariano Z, et al.

Psychopathology in patients with ICDs over time:

results of a prospective study. Pacing Clin Electro-

physiol 2010;33:198–208.

23. Pedersen S, Broek K, Theuns D, et al. Risk of chronic

anxiety in implantable defibrillator patients: a multi-

center study. Int J Cardiol 2009. Available at: http://

dx.doi.org/10.1016/j.ijcard.2009.09.549. Accessed

August 21, 2010.

24. Broek K, Nyklıcek I, Denollet J. Anxiety predicts poor

perceived health in patients with an implantable

defibrillator. Psychosomatics 2009;50:483–92.

25. Martens E, Jonge P, Na B, et al. Scared to death?

Generalized anxiety disorder and cardiovascular

events in patients with stable coronary heart

disease: the Heart and Soul Study. Arch Gen Psychi-

atry 2010;67:750–8.

26. Shibeshi W, Young-Xu Y, Blatt C. Anxiety worsens

prognosis in patients with coronary artery disease.

J Am Coll Cardiol 2007;49:2021–7.

27. Kuhl E, Dixit N, Walker R, et al. Measurement of

patient fears about implantable cardioverter defibril-

lator shock: an initial evaluation of the Florida Shock

Anxiety Scale. Pacing Clin Electrophysiol 2006;29:

614–8.

28. Ladwig K-H, Baumert J, Marten-Mittag B, et al. Post-

traumatic stress symptoms and predicted mortality in

patients with implantable cardioverter-defibrillators:

results from the prospective living with an implanted

cardioverter-defibrillator study. Arch Gen Psychiatry

2008;65:1324–30.

29. Sears S, Todaro J, Urizar G, et al. Assessing the

psychosocial impact of the ICD: a national survey of

implantable cardioverter defibrillator health care

providers. Pacing Clin Electrophysiol 2000;23:939–45.

30. Whang W, Albert C, Sears S, et al. Depression as

a predictor for appropriate shocks among patients

with implantable cardioverter-defibrillators: results

from the Triggers of Ventricular Arrhythmias (TOVA)

study. J Am Coll Cardiol 2005;45:1090–5.

31. Goodman M, Hess B. Provide a human model sup-

porting the learned helplessness theory of depres-

sion? Gen Hosp Psychiatry 1999;8343:382–5.

32. Sears S, Conti J, Curtis A, et al. Affective distress

and implantable cardioverter defibrillators: cases

for psychological and behavioral interventions.

Pacing Clin Electrophysiol 1999;22:1831–4.

33. Pedersen S, Domburg R, Theuns D, et al. Type D

personality is associated with increased anxiety

and depressive symptoms in patients with an

implantable cardioverter defibrillator and their part-

ners. Psychosom Med 2004;66:714–9.

34. Pedersen S, Broek K, Erdman R, et al. Pre-implanta-

tion implantable cardioverter defibrillator concerns

and Type D personality increase the risk of mortality

in patients with an implantable cardioverter defibril-

lator. Europace 2010;12:1446–52.

35. SweeneyM, Sherfesee L, DeGroot P, et al. Differences

in effects of electrical therapy type for ventricular

arrhythmias on mortality in implantable cardioverter-

defibrillator patients. Heart Rhythm 2010;7:353–60.

36. Vazquez L, Kuhl E, Shea J, et al. Age-specific differ-

ences in women with implantable cardioverter defi-

brillators: an international multi center study.

Pacing Clin Electrophysiol 2008;31:1528–34.

37. Sears S, Burns J, Handberg E, et al. Young at

heart: understanding the unique psychosocial

adjustment of young implantable cardioverter defi-

brillator recipients. Pacing Clin Electrophysiol

2001;24:1113–7.

38. Dubin A, Batsford W, Lewis R, et al. Quality-of-life in

patients receiving implantable cardioverter defibril-

lators at or before age 40. Pacing Clin Electrophysiol

1996;19:1555–9.

39. Hallas C, Burke J, White D, et al. Pre-ICD illness

beliefs affect postimplant perceptions of control

and patient quality of life. Pacing Clin Electrophysiol

2010;33:256–65.

40. Thomas S, Friedmann E, Gottlieb S, et al. Changes

in psychosocial distress in outpatients with heart

failure with implantable cardioverter defibrillators.

Heart Lung 2009;38:109–20.

41. Pedersen S, Theuns D, Jordaens L, et al. Course of

anxiety and device-related concerns in implantable

cardioverter defibrillator patients the first year post

implantation. Europace 2010;12:1119–26.

42. Versteeg H, Baumert J, Kolb C, et al. Somatosensory

amplification mediates sex differences in psycholog-

ical distress among cardioverter-defibrillator patients.

Health Psychol 2010;29:477–83.

43. Natale A, Davidson T, Geiger M, et al. Implantable

cardioverter-defibrillators and pregnancy: a safe

combination? Circulation 1997;96:2808–12.

44. Vazquez L, Conti J, Sears S. Female-specific educa-

tion, management, and lifestyle enhancement for

implantable cardioverter defibrillator patients: the

FEMALE-ICD study. Pacing Clin Electrophysiol

2010;33:1131–40.

45. Bostwick J, Sola C. An updated review of implant-

able cardioverter/defibrillators, induced anxiety,

and quality of life. Psychiatr Clin North Am 2007;

30:677–88.

Caring for the Heart and Mind in ICD Patients 461

46. Pedersen S, Sears S, Burg M, et al. Does ICD indi-

cation affect quality of life and levels of distress?

Pacing Clin Electrophysiol 2009;32:153–6.

47. Sears S, Conti J. Quality of life and psychological

functioning of ICD patients. Heart 2002;87:488–93.

48. Sears S, Matchett M, Conti J. Effective management

of ICD patient psychosocial issues and patient crit-

ical events. J Cardiovasc Electrophysiol 2009;20:

1297–304.

49. Dixit N, Vazquez L, Cross N, et al. Cardiac resynch-

ronization therapy: a pilot study examining cognitive

change in patients before and after treatment. Clin

Cardiol 2010;33:84–8.

50. Pedersen S, Broek K, Berg M, et al. Shock as

a determinant of poor patient-centered outcomes

in implantable cardioverter defibrillator patients: is

there more to it than meets the eye? Pacing Clin

Electrophysiol 2010;33:1430–6.

51. Sears S, Kirian K. Shock and patient-centered

outcomes research: is an ICD shock still a critical

event? Pacing Clin Electrophysiol 2010;33:1437–41.

52. Braunschweig F, Boriani G, Bauer A, et al. Manage-

ment of patients receiving implantable cardiac defi-

brillator shocks: recommendations for acute and

long-term patient management. Europace 2010;12:

1673–90.

53. Mishkin J, Saxonhouse S, Woo G, et al. Appropriate

evaluation and treatment of heart failure patients after

implantable cardioverter-defibrillator discharge: time

to go beyond the initial shock. J AmColl Cardiol 2009;

54:1993–2000.

54. Heller S, Ormont M, Lidagoster L, et al. Psychosocial

outcome after ICD implantation: a current perspec-

tive. Pacing Clin Electrophysiol 1998;21:1207–15.

55. Herrmann C, Muhen F, Schaumann A, et al. Stan-

dardized assessment of psychological well-being

and quality-of-life in patients with implanted defibril-

lators. Pacing Clin Electrophysiol 1997;20:95–103.

56. Irvine J, Dorian P, Baker B, et al. Quality of life in the

Canadian Implantable Defibrillator Study (CIDS).

Am Heart J 2002;144:282–9.

57. Luderitz B, Jung W, Deister A, et al. Patient accep-

tance of the implantable cardioverter defibrillator in

ventricular tachyarrhythmias. Pacing Clin Electro-

physiol 1993;16:1815–21.

58. Passman R, Subacius H, Ruo B, et al. Implantable

cardioverter defibrillators and quality of life: results

from the defibrillators in nonischemic cardiomyop-

athy treatment evaluation study. Arch Intern Med

2007;167:2226–32.

59. Redhead A, Turkington D, Rao S, et al. Psychopa-

thology in postinfarction patients implanted with

cardioverter-defibrillators for secondary prevention. A

cross-sectional, case-controlled study. J Psychosom

Res 2010;69:555–63.

60. Sears S, Serber E, Lewis T, et al. Do positive health

expectations and optimism relate to quality-of-life

outcomes for the patient with an implantable cardi-

overter defibrillator? J Cardiopulm Rehabil 2004;

24:324–31.

61. Dunbar S, Jenkins L, Hawthorne M, et al. Factors

associated with outcomes 3 months after implant-

able cardioverter defibrillator insertion. Heart Lung

1999;28:303–15.

62. American Psychiatric Association. Diagnostic and

statistical manual of mental disorders. Text revision.

4th edition. Washington, DC: American Psychiatric

Association; 2000.

63. Dunbar S. Psychosocial issues of patients with

implantable cardioverter defibrillators. Am J Crit

Care 2005;14:294–303.

64. Sears S, Sowell L, Cross N, et al. Clinical manage-

ment of key concerns for patients with implantable

cardioverter defibrillators. In: Lu F, Benditt D,

editors. Cardiac pacing and defibrillation: principle

and practice. P.R. China: People’s Medical

Publishing House; 2008. p. 586–94.

65. Sears S, Shea J, Conti J. Cardiology patient page.

How to respond to an implantable cardioverter-

defibrillator shock. Circulation 2005;111:380–2.

66. Shea J. Quality of life issues in patients with implant-

able cardioverter defibrillators: driving, occupation,

and recreation. AACN Clin Issues 2004;15:478–89.

67. Marx A, Bollman A, Dunbar SB, et al. Psychological

reactions among family members of patients with

implantable defibrillators. Int J Psychiatry Med

2001;31:375–87.

68. Hazelton G, Sears S, Kirian K, et al. Cardiology

patient page. coping with my partner’s ICD and

cardiac disease. Circulation 2009;120:73–6.

69. Gibson D, Kuntz K, Levenson J, et al. Decision-

making, emotional distress, and quality of life in

patients affected by the recall of their implantable

cardioverter defibrillator. Europace 2008;10:540–4.

70. Birnie D, Sears S, Green M, et al. No long-term

psychological morbidity living with an implant-

able cardioverter defibrillator under advisory:

the Medtronic Marquis experience. Europace

2009;11:26–30.

71. Keren A, Sears S, Nery P, et al. Psychological adjust-

ment in ICD patients living with advisory fidelis

leads. J Cardiovasc Electrophysiol 2011;22:57–63.

72. Kapa S, Hyberger L, Rea R, et al. Complication risk

with pulse generator change: implications when re-

acting to a device advisory or recall. Pacing Clin

Electrophysiol 2007;30:730–3.

73. Fisher J, Koulogiannis K, Lewallen L, et al. The

psychological impact of implantable cardioverter-

defibrillator recalls and the durable positive effects

of counseling. Pacing Clin Electrophysiol 2009;32:

1012–6.

74. Goldstein N, Lampert R, Bradley E, et al. Manage-

ment of implantable cardioverter defibrillators in

end-of-life care. Ann Intern Med 2004;141:835–8.

Ford et al462

75. Lampert R, Hayes D, Annas G, et al. HRS Expert

Consensus Statement on the Management of

Cardiovascular Implantable Electronic Devices

(CIEDs) in patients nearing end of life or requesting

withdrawal of therapy this document was developed

in collaboration with the American College of Cardi-

ol. Heart Rhythm 2010;7:1008–26.

76. Salmoirago-Blotcher E,Ockene I.Methodological limi-

tationsofpsychosocial interventions inpatientswithan

implantable cardioverter-defibrillator (ICD) a system-

atic review. BMC Cardiovasc Disord 2009;9:56.

77. Chevalier P, Cottraux J, Mollard E, et al. Prevention of

implantable defibrillator shocks by cognitive behav-

ioral therapy: a pilot trial. Am Heart J 2006;151:191.

78. Dougherty C, Lewis F, Thompson E, et al. Short-term

efficacy of a telephone intervention by expert nurses

after an implantable cardioverter defibrillator. Pacing

Clin Electrophysiol 2004;27:1594–602.

79. Edelman S, Lemon J, Kidman A. Psychological ther-

apies for recipients of implantable cardioverter defi-

brillators. Heart Lung 2003;32:234–40.

80. Dunbar S, Langberg J, Reilly C, et al. Effect of a psy-

choeducational intervention on depression, anxiety,

and health resource use in implantable cardioverter

defibrillator patients. Pacing Clin Electrophysiol

2009;32:1259–71.

81. Fitchet A, Doherty P, Bundy C, et al. Comprehensive

cardiac rehabilitation programme for implantable

cardioverter-defibrillator patients: a randomised

controlled trial. Heart 2003;89:155–60.

82. Frizelle D, Lewin R, Kaye G, et al. Cognitive-behav-

ioural rehabilitation programme for patients with an

implanted cardioverter defibrillator: a pilot study. Br

J Health Psychol 2004;9:381–92.

83. Lewin R, Coulton S, Frizelle D, et al. A brief cogni-

tive behavioural preimplantation and rehabilitation

programme for patients receiving an implantable

cardioverter-defibrillator improves physical health

and reduces psychological morbidity and unplanned

readmissions. Heart 2009;95:63–9.

84. Carlsson E, Olsson S, Hertervig E. The role of the

nurse in enhancing quality of life in patients with an

implantable cardioverter-defibrillator: the Swedish

experience. Prog Cardiovasc Nurs 2002;17:18–25.

85. Kuhl E, Sears S, Conti J. Using computers to

improve the psychosocial care of implantable cardi-

overter defibrillator recipients. Pacing Clin Electro-

physiol 2006;29:1426–33.

86. Dickerson S, Posluszny M, Kennedy M. Help

seeking in a support group for recipients of implant-

able cardioverter defibrillators and their support

persons. Heart Lung 2000;29:87–96.

87. Badger J, Morris J. Observations of a support group

intervention for automatic implantable cardioverter

defibrillator recipients and their spouses. Heart

Lung 1989;18:238–43.

88. Dickerson SS, Wu YW, Kennedy MC. A CNS-facili-

tated ICD support group: a clinical project evalua-

tion. Clin Nurse Spec 2006;20:146–53.

89. Molchany C, Peterson K. The psychosocial effects of

support group intervention on AICD recipients and

their significant others. Prog Cardiovasc Nurs

1994;9:23–9.

90. Sneed N, Finch N, Michel Y. The effect of psychoso-

cial nursing intervention on the mood state of

patients with implantable cardioverter defibrillators

and their caregivers. Prog Cardiovasc Nurs 1997;

12:4–14.

91. Myers G, James G. Social support, anxiety, and

support group participation in patients with an

implantable cardioverter defibrillator. Prog Cardio-

vasc Nurs 2008;23:160–7.