An exploratory assessment of pediatric patient and parent needs after implantable cardioverter defibrillator implant.

BACKGROUND: Placement of an implantable cardioverter defibrillator (ICD) is often accompanied by psychological adjustment issues in pediatric patients and their parents. Although anxiety, depression, and lowered quality of life have been seen in these patients, no studies have investigated patient or parent reported needs. This exploratory study describes the needs of pediatric ICD patients and parents and assesses whether patient factors of age, gender, depression, and anxiety are associated with specific needs. METHODS: ICD patients ages 8-21 years and their parents completed a needs analysis survey assessing various domains of functioning. Patients also completed self-reported measures of depression and anxiety. RESULTS: Thirty-two patients (28% female) and their parents (72% mothers) completed the survey. Patients' most frequently endorsed needs involved educational issues: understanding their cardiac event/diagnosis (34%), medications (34%), and how the ICD would change their lifestyle (31%). Parents' most frequently endorsed needs involved family issues; almost half of parents (47%) were concerned about their children's frustration with their overprotectiveness and 28% were concerned with their child feeling depressed or anxious. Patients who reported feeling overprotected (12.1 ± 3.4 vs 17.4 ± 3.5 years; P = .001) were significantly younger than those who did not. Experiencing peer issues was more frequently endorsed by females than males (33% of females vs 4% of males; P = .026). CONCLUSIONS: ICD patients and parents endorsed markedly different needs. Patients focused on understanding their ICD, whereas parents were more focused on their children's emotional needs. Novel ways of educating patients about their device and clinic-based screenings of emotional functioning may serve to meet these needs.

Living with hypertrophic cardiomyopathy and an implantable defibrillator.

BACKGROUND: ICDs efficiently terminate life-threatening arrhythmias, but complications occur during long-term follow-up. Patients' own perspective is largely unknown. The aim of the study was to describe experiences of hypertrophic cardiomyopathy (HCM) patients with implantable defibrillators (ICDs). METHODS: We analyzed 26 Swedish patient interviews using hermeneutics and latent content analysis. RESULTS: Patients (aged 27-76 years) were limited by HCM especially if it deteriorates into heart failure. The ICD implies safety, gratitude, and is accepted as a part of the body even when inappropriate ICD shocks are encountered. Nobody regretted the implant. Both the disease and the ICD affected professional life and leisure time activities, especially at younger ages. Family support was usually strong, but sometimes resulted in overprotection, whereas health care focused on medical issues. Despite limitations, patients adapted, accepted, and managed challenges. CONCLUSION: HCM patients with ICDs reported good spirit and hope even though they had to adapt and accept limitations over time.

Gender Disparities in Symptoms of Anxiety, Depression, and Quality of Life in Defibrillator Recipients.

BACKGROUND: Most patients cope well with an implantable cardioverter defibrillator (ICD), but psychological distress and ICD-related concerns have been reported in about 20% of ICD recipients. Many previous studies have not distinguished between genders. METHODS: In this nationwide study we compared quality of life, anxiety, and depression symptoms between the genders in ICD recipients, and determined predictors of each of these variables in men and women. All adult Swedish ICD recipients were invited by mail to participate and 2,771 patients (66 ± 12 years) completed standardized measures of quality of life, symptoms of anxiety, and depression. Time since implantation ranged from 1 year to 23 years with a mean of 4.7 ± 3.9. RESULTS: Women reported worse quality of life (mean index 0.790 vs 0.825) and higher prevalence of anxiety (20.5% vs 14.7%) than did men (P < 0.001 for both comparisons), while there were no differences in symptoms of depression (8.8% vs 8.2%). CONCLUSIONS: Most ICD recipients report a good quality of life, without emotional distress, but among the minority with distress, women fare worse than men.

The implantable cardioverter defibrillator in congestive heart failure patients in primary prevention: assessment of neuropsychological impact.

AIM: Cognitive impairment, anxiety and depression have been described in patients with congestive heart failure (CHF). The aim was to analyse the prevalence of cognitive impairment and anxiety-depression in an in-hospital CHF population before discharge attempting to correlate with the presence of an implantable cardioverter defibrillator (ICD). METHODS: All subjects underwent a mini mental state examination (MMSE), geriatric depression scale (GDS), hospital anxiety and depression scale test (HADS). RESULTS: Three-hundred and eighteen CHF patients (age 71.6 years, 195 males) were analysed. The mean New York Heart Association class (NYHA) was 2.9±0.8, left ventricular ejection fraction (LVEF) was 43.4±15.8%; brain natriuretic peptide (BNP) plasma level was 579.8±688.4 pg/mL. In 9.6% a pathological MMSE score emerged; a depression of mood in 18.2% and anxiety in 23.4% of patients were observed. An ICD was implanted in 43 (14.2%) CHF patients for primary prevention of cardiac sudden death. Patients in ICD group demonstrated a higher prevalence of renal impairment (creatinine 1.7±0.7 vs. 1.2±0.8 mg/dL; P=0.0001), lower LVEF (24.9±8.9 vs. 46.2±14.6% P=0.0001) and higher BNP (717.1±538 vs. 345.4±448.6 pg/ml; P=0.0001) but similar 6-minute walking test (338.6±81.3 vs. 345.3±114.9 m; P=0.8). An ICD intervention was registered in 9 (20.9%) patients. Although clinical parameters seemed to describe a sicker population in ICD implanted patients, from neuropsychological tests did not emerge any significant differences (P=NS for MMSE, GDS and HADS). CONCLUSION: ICD-implanted CHF patients for primary prevention did not reveal a worsening in anxiety and depression of mood demonstrating a similar cognitive performance in comparison with non-ICD implanted.

Impact of in-clinic follow-up visits in patients with implantable cardioverter defibrillators: demographic and socioeconomic analysis of the TARIFF study population.

PURPOSE: Remote monitoring of cardiac implantable electronic devices has been demonstrated to safely reduce frequency of hospital visits. Limited studies are available evaluating the economic impact. The aim of this article is to highlight the social impact and costs for the patients associated with hospital visits for routine device follow-up at the enrollment visit for the TARIFF study (NCT01075516). METHODS: TARIFF is a prospective, cohort, observational study designed to compare the costs and impact on quality of life between clinic-based and remote care device follow-up strategies. RESULTS: Two hundred nine patients (85.2 % males) were enrolled in the study; 153 patients (73.2 %) were retired, 36 (17.2 %) were active workers, 18 (8.6 %) were housewives, and 2 (1.0 %) were looking for a job. Among active workers, 63.9 % required time off from work to attend the hospital visit, while 67.0 % of all patients had to interrupt daily activities. The majority of patients spent half a day or more attending the visit. A carer accompanied 77 % of patients. Among carers, 36.6 % required time off from work, and 77.6 % had to interrupt daily activities. Median distance traveled was 36 km. The average cost of travel was 10 euros with 25 % of patients spending more than 30 euros. CONCLUSIONS: Data from patients enrolled in the TARIFF registry confirm that there are social and economic impacts to patients attending routine device checks in hospital which can be significantly reduced by using a remote monitoring strategy.

Poor health status and distress in cardiac patients: the role of device therapy vs. underlying heart disease.

AIMS: Implantable cardioverter defibrillator (ICD) therapy, which includes the risk of shocks, is considered the primary culprit of reductions in patient reported outcomes (PROs; e.g. health status and distress), thereby negating the role of underlying disease severity. We examined the relative influence of living with an ICD vs. congestive heart failure (CHF) on PROs and compared (i) ICD patients without CHF (ICD only), (ii) CHF patients without an ICD (CHF-only), and (iii) CHF patients with an ICD (ICD + CHF). METHODS AND RESULTS: Separate cohorts of ICD and CHF patients (N = 435; 75% men) completed PROs at baseline, 6 and 12 months. Groups differed on physical health status only at baseline (F((2,415)) = 7.15, P = 0.001) and on anxiety at 12 months (F((2,415)) = 4.04, P = 0.01); ICD + CHF patients had the most impaired physical health status but the lowest anxiety level followed by the ICD only and CHF only patients. Congestive heart failure only patients had the most impaired mental health status and reported the highest level of anxiety as compared to the ICD only (P < 0.001) and ICD + CHF groups (P = 0.009), while the two latter groups did not differ. The effect sizes ranged from very small (0.03) to moderate-large (0.69). Groups did not differ in depression scores. CONCLUSION: Congestive heart failure patients reported worse PROs as compared to ICD patients, although the magnitude of the differences was relatively small. This suggests that the well being of patients is not necessarily negatively influenced by the implantation of an ICD, and that underlying heart disease may have at least an equal if not greater influence on PROs.

Determining psychosocial research priorities for adolescents with implantable cardioverter defibrillators using Delphi methodology.

BACKGROUND AND RESEARCH OBJECTIVE: Adolescents with implantable cardioverter defibrillators (ICDs) have unique psychosocial needs that are not currently addressed in the literature. To prioritize these issues into a concise cardiovascular nursing research agenda, the objective of this study was to identify current psychosocial issues in this population by obtaining expert consensus from experienced pediatric dysrhythmia clinicians. SUBJECTS AND METHODS: A 3-round electronic Delphi study was conducted. A multidisciplinary purposive sample was drawn from 2 international organizations of pediatric and young adult cardiovascular caregivers who specialize in rhythm disturbances in this patient population. Round 1 included an open-ended question in which respondents were asked to provide as many psychosocial issues as desired, but at least 5. Round 2 included the 10 most frequent issues, which participants were asked to rank (1 = most important, 10 = least important). Round 3 included the collective ranking of the respondents using mean values; respondents were asked to indicate agreement/disagreement with the final ranking. If they disagreed, they were asked to re-rank the items. RESULTS AND CONCLUSIONS: The top 10 psychosocial issues identified by the panel included, in order of importance: fear of being shocked, sports participation/activity restrictions, feeling different from peers/peer acceptance, depression, adjustment problems, fear of death, medication noncompliance, acting out, body change/weight gain, and issues related to planning for adulthood. There was 90% agreement among the expert panel members. Ascertaining the opinions and consensus of pediatric cardiovascular dysrhythmia experts has led to the development of a concise research agenda for the psychosocial issues faced by children and adolescents with ICDs. The identification of these issues will allow nurse researchers to incorporate these findings into future studies in which interventions aimed at promoting positive adjustment to the ICD in the child and adolescent age group can be tested.

Examination of the effect of implantable cardioverter-defibrillators on health-related quality of life: based on results from the Multicenter Automatic Defibrillator Trial-II.

While implantable cardioverter-defibrillators (ICDs) improve survival, their benefit in terms of health-related quality of life (HRQOL) is negligible. To examine how shocks and congestive heart failure (CHF) mediate the effect of ICDs on HRQOL. The US patients from the MADIT-II (Multicenter Automatic Defibrillator Trial-II) trial (n = 983) were randomized to receive an ICD or medical treatment only. HRQOL was assessed using the Health Utility Index 3 at baseline and 3, 12, 24, and 36 months following randomization. Logistic regressions were used to test for the effect of ICDs on the CHF indicator, and linear regressions were used to examine the effect of ICD shocks and CHF on HRQOL in living patients. We used a Monte Carlo simulation and a parametric Weibull distribution survival model to test for the effect of selective attrition. Observations were clustered by patients and robust standard errors (RSEs) were used to control for the non-independence of multiple observations provided by the same patient. Patients in the ICD arm had 41% higher odds of experiencing CHF since their last assessment compared with those in the control arm (RSE = 0.19, p = 0.01). Developing CHF reduced HRQOL at the subsequent visit by 0.07 (p < 0.01). Having ICD shocks reduced overall HRQOL by 0.04 (p = 0.04) at the subsequent assessment. The negative effect of ICD firing on HRQOL was an order of magnitude greater than the effect of CHF. A higher prevalence of CHF and shocks among patients with ICDs and their negative effect on HRQOL may partially explain the lack of HRQOL benefit of ICD therapy.

A psychiatric-cardiac case: analysis for education and clinical practice.

Psychiatric patients are now known to have disproportionately high cardiovascular disease mortality rates. Today's nurse needs more knowledge to manage the care of the psychiatric-cardiac patient. This paper uses a case scenario to cite essential components of care. Psychiatric-cardiac events are explained using a conceptual model. The model provides the nurse with a template for identifying needs and mapping the changes observed through therapy. The paper serves as an organizing tool for clinical practice and a case presentation for continued education of nurses.

The experiences and concerns of young adults (18-40 years) living with an implanted cardioverter defibrillator (ICD).

BACKGROUND: Although the implanted cardioverter defibrillator (ICD) is a widely accepted life-saving technology, adjusting to life after ICD implantation may vary according to the recipient's age. Few studies have investigated how young adults manage life with an ICD and there are no studies describing their concerns or experiences of living with an ICD. AIM: The aim of the study was to describe the experiences and concerns of young adults (18-40 years) living with an ICD. METHODS: Qualitative descriptive methodology was chosen incorporating interviews and written narrative responses to investigate twenty young adult's experiences of living with an ICD. RESULTS: There were four descriptive categories: psychosocial, developmental, physical, and economical. Themes in the psychosocial category were: returning to normal, mood disturbances, and body image concerns. Themes in the developmental category were unique to young adults: childbearing and childrearing, while themes in the physical category were expectation regarding physical activity, and the economical category, the issue of financial security. CONCLUSIONS: These data reveal that young adults with ICDs experience the unique concerns of childbearing, childrearing, and are worried about their financial security. These findings provide insight for the development of age-appropriate interventions for young adults before and after ICD implantation.

Costs and quality-of-life effects of implantable cardioverter-defibrillators.

Although the clinical efficacy of implantable cardioverter-defibrillators (ICDs) has been convincingly demonstrated in clinical trials, the impact of ICDs on health care costs and recipients' quality of life (QOL) is less certain. The existing medical research on the health care costs and QOL effects of ICDs was reviewed and summarized. Medline and the Institute for Scientific Information's Web of Knowledge were searched for publications reporting costs of care and QOL assessments of ICD recipients. Unpublished and non-peer-reviewed "gray" publications were excluded. Reports were included if they reported primary, original patient data that were collected after 1993, when nonthoracotomy defibrillators entered clinical practice. Two reviewers independently evaluated publications for relevance and quality, abstracted study data, and summarized the findings. Excessive heterogeneity among studies prevented formal meta-analysis, so a narrative synthesis was performed, and key themes were identified from the published research. There were limited published data on the costs of ICD care, especially for the primary prevention of sudden cardiac death. The published research on ICD QOL lacked large, multicenter, longitudinal studies. Many ICD QOL studies were performed in small numbers of patients at single centers. Initial ICD implantation costs ranged (in 2006 United States dollars) from $28,500 to $55,200, with annual follow-up costs ranging from $4,800 to $17,000. QOL was higher for ICD recipients than for patients treated with antiarrhythmic drugs, but there was a substantial prevalence of anxiety, depression, and "loss of control" in ICD recipients, particularly in those who had received ICD shocks. In conclusion, ICD implantation remains costly but may be becoming less expensive over time, and ICD recipients' QOL is significantly affected by their devices.

Resource loss predicts depression and anxiety among patients treated with an implantable cardioverter defibrillator.

OBJECTIVE: Many patients treated with an implantable cardioverter defibrillator (ICD) experience clinically significant depression and anxiety after ICD implantation. As ICD use continues to evolve, it is important to understand the correlates of depression and anxiety to identify patients at greatest risk of poor psychological functioning. Conservation of resources theory, a general theory of stress, states that people experience greater stress if they perceive that they are losing personal, social, and material resources. We hypothesized that perceptions of resource loss would be related to symptoms of depression and anxiety after controlling for other known predictors. METHODS: One hundred patients treated with an ICD completed standardized depression and anxiety questionnaires along with questionnaires assessing social support, physical functioning, and resource loss. Clinical variables for patients were obtained from prospectively obtained medical records. RESULTS: Over 20% of the sample exhibited elevated symptoms of depression and anxiety. Patients' depression levels were associated with poor social support, poor physical functioning, a history of depression, and a greater length of time since ICD implantation. Having experienced one or more clinical ICD shocks was related to depression but not anxiety. Higher levels of perceived resource loss were associated with higher levels of both depression and anxiety after controlling for all other predictors. CONCLUSIONS: Resource loss may help to determine psychological distress after ICD implantation. Understanding how resource loss contributes to depression and anxiety may help to identify patients at greatest risk of poor psychological functioning and may suggest treatment strategies.

Gender differences in implantable cardioverter-defibrillator patients at the time of insertion.

Gender differences in physical and psychological health and responses in persons receiving implantable cardioverter-defibrillators (ICDs) have been reported but are not well delineated. This study examined symptoms of pain and sleep difficulties, functional status, and psychological responses in 180 (75%) men and 60 (25%) women before and immediately following their first ICD implantation. Women were significantly younger, less likely to be married, and had less history of coronary artery disease than men. Forty-eight percent of women were New York Heart Association class III-IV vs. 27% of men (p<0.05). Women had lower functional status and were more likely to report symptoms of increased pain severity and sleep difficulties. Differences in functional status and pain were reduced after adjusting for New York Heart Association class and age, respectively. There were no differences in depressive symptoms or anxiety. Clinical implications of gender-related responses include the need to address symptoms of heart failure as well as increased pain and sleep difficulties in women at the time surrounding ICD implantation. Longitudinal studies and gender-focused nursing interventions should be developed to promote better understanding of responses and to improve recovery outcomes for ICD patients.

Implantable cardioverter defibrillator (ICD) in children.

BACKGROUND: Implantable cardioverter defibrillators (ICD) proved to be effective in the prevention of sudden cardiac death in adults. In children, the experience of ICD therapy is limited. This retrospective study was undertaken to review our experience with ICD implantation in children with special consideration of psychosocial impact of this therapy. METHODS AND RESULTS: Sixteen children (f:5, m:11, median age 12.2 years, range 4-15.9 years) received an ICD. Eleven patients had survived sudden cardiac death with documented ventricular fibrillation (VF) and five patients had sustained ventricular tachycardia (VT) with hemodynamic significance. The underlying heart disease was congenital in 5, hypertrophic cardiomyopathy in 2, myocarditis in 2 and primary electrical in 7 patients. All leads were implanted transvenously. Mean follow up was 43.1 months (range 1-105 months). All patients are alive. In 7 patients, a total of 387 sustained VT episodes were detected by the ICD. At follow-up, 10 inappropriate shocks were delivered in four patients. One early and six late lead revisions were done in seven patients. 12/16 (75%) patients had concomitant antiarrhythmic drug therapy. About half of the adolescents showed signs of depression and/or anxiety. CONCLUSION: ICD therapy via transvenous access for prevention of sudden cardiac death is feasible and effective even in small children. However, the occurrence of lead complications is significant. Since about half of the adolescents showed signs of depression and/or anxiety, professional psychological surveillance should be considered in these patients.

Partners of ICD patients--an exploratory study of their experiences.

BACKGROUND: The experiences of partners who care for and support the needs of a loved one with an implantable cardiac defibrillator (ICD) remain largely unknown within Europe. AIMS: This study explored the nature of partner's experiences from the pre-ICD implantation phase up until a maximum of 20 months at home. METHODS: Eight partners cohabiting with a recipient of an ICD were interviewed using a semistructured schedule. All interviews were transcribed and content analysed for emerging categories and themes. FINDINGS: Four themes representing 11 categories conceptualised the partners' experiences, these included: Acknowledging the patient's need for the device, reactions to the device, safeguarding the patient, and returning to normality. CONCLUSION: This qualitative study suggests that partners of ICD recipients progress through various difficult and adaptive stages when learning how best to support the patient. A point is reached when most are able to assume control and normalise their lives. This transformation is slow; however, to improve this process and empower partners, nurses should provide relevant information and include them in decisions affecting the patient. Further research into the unique needs of partners, which includes international perspectives, would be significant in developing practice and theory in this area.

A 12-month quality of life assessment of cardiac arrest survivors treated with or without an implantable cardioverter defibrillator.

BACKGROUND: Previous studies indicate that the implantable cardioverter defibrillator (ICD) has a large impact on the quality of life of patients. The effects of having an ICD over longer periods of times has been less studied. OBJECTIVE: To assess the quality of life and well-being of cardiac arrest survivors who have received an implantable cardioverter defibrillator (ICD) or other treatment. METHODS: 168 patients were monitored for 1 year and completed four questionnaires. RESULTS: No differences were found between the two treatments regarding quality of life (except for pain, ICD patients perceived less pain) and well-being. A significant improvement in physical and social function, and in mental health was found in the first 6 months. Older patients (60 years or older) perceived less improvement in their health than younger patients. Women reported having poorer social function. The prevalence of anxiety and probable depression was high irrespective of the treatment received: anxiety and depressive symptoms did not change significantly between 1 and 12 months after discharge. Patients with higher anxiety scores experienced less improvement in health and patients with more depressive symptoms experienced poorer social function. CONCLUSIONS: The prevalence of anxiety and probable depression was high in cardiac arrest survivors. Probable depression affected social function. Those patients who felt anxious experienced less health improvement. Quality of life and well-being were not affected by the type of treatment. We conclude that surviving an out-of-hospital cardiac arrest has a greater impact on patients than the treatment received.