Adolescents with Implantable Cardioverter Defibrillators: A Patient and Parent Perspective

Rahman, Belinda; Macciocca, Ivan; Sahhar, Margaret; Kamberi, Suleman; Connell, V.; Duncan, Rony E.

doi:10.1111/j.1540-8159.2011.03229.x

Cited by 47 publications

(39 citation statements)

References 25 publications

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“…Specifically, some parents reported that their children struggled with ''feeling different'' and that they expressed desire to be more like their peers. These responses were similar to the findings made by a study where interviews were conducted with children with an ICD and their parents [14].…”

Section: Communication Surrounding the Cardiomyopathysupporting

confidence: 81%

Exploring the Discussion of Risk of Sudden Cardiac Death

et al. 2015

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Sudden arrhythmic death syndrome (SADS), where death is secondary to cardiac arrhythmia, is associated with several cardiac ion channelopathies, including long QT syndrome and Brugada syndrome, as well as cardiomyopathies such as hypertrophic cardiomyopathy and dilated cardiomyopathy. Many of these conditions often present in childhood or adolescence. This study investigates how diagnoses of cardiac diseases associated with SADS are communicated within families. A questionnaire was distributed through cardiac disease-focused support groups and organizations. Data from 114 parents who have a child with a SADS condition were used for analysis. Based on the responses, parents explained the risk of SADS in a straightforward manner and related the risk to the importance of compliance with the prescribed treatment. Participants also found it difficult to determine and enforce lifestyle modifications, manage individuals' emotional reactions, convey the seriousness of the information without scaring their children, and discuss the risk of SADS during these conversations. Concerns regarding disease progression, length and quality of life, and treatment failures were also expressed. Healthcare providers, the Internet, other affected people, visual aids, and personal experience were all reported to be helpful for facilitating these discussions. Services and resources requested by participants included children's support groups, a counselor or psychologist, and child-oriented materials. Increased understanding of how families discuss children's diagnosis of SADS conditions will equip healthcare providers with the information to address parental concerns and help facilitate meaningful and informative discussions within families.

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Section: Communication Surrounding the Cardiomyopathysupporting

confidence: 81%

Exploring the Discussion of Risk of Sudden Cardiac Death

et al. 2015

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“…Healthy college athletes have higher physical, emotional, and social functioning and quality-of-life scores than nonathletes, yet athletes sidelined with an injury score lower in all of these domains than both active athletes and nonathletes. 9 Many adolescents with ICDs 10 and their physicians 11 report restriction from sports and the resultant feeling of not being normal 10 as one of the most important negative aspects of their device. The basic principle of patient-centered care is that only the patient can determine what brings quality to his/her life.…”

Section: Discussionmentioning

confidence: 99%

Safety of Sports for Athletes With Implantable Cardioverter-Defibrillators

et al. 2013

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Background-The risks of sports participation for implantable cardioverter-defibrillator (ICD) patients are unknown. Methods and Results-Athletes with ICDs (age, 10-60 years) participating in organized (n=328) or high-risk (n=44) sports were recruited. Sports-related and clinical data were obtained by phone interview and medical records. Follow-up occurred every 6 months. ICD shock data and clinical outcomes were adjudicated by 2 electrophysiologists. Median age was 33 years (89 subjects <20 years of age); 33% were female. Sixty were competitive athletes (varsity/junior varsity/traveling team). A pre-ICD history of ventricular arrhythmia was present in 42%. Running, basketball, and soccer were the most common sports. Over a median 31-month (interquartile range, 21-46 months) follow-up, there were no occurrences of either primary end point-death or resuscitated arrest or arrhythmia-or shock-related injury-during sports. There were 49 shocks in 37 participants (10% of study population) during competition/practice, 39 shocks in 29 participants (8%) during other physical activity, and 33 shocks in 24 participants (6%) at rest. In 8 ventricular arrhythmia episodes (device defined), multiple shocks were received: 1 at rest, 4 during competition/practice, and 3 during other physical activity. Ultimately, the ICD terminated all episodes. Freedom from lead malfunction was 97% at 5 years (from implantation) and 90% at 10 years. Conclusions-Many athletes with ICDs can engage in vigorous and competitive sports without physical injury or failure to terminate the arrhythmia despite the occurrence of both inappropriate and appropriate shocks. These data provide a basis for more informed physician and patient decision making in terms of sports participation for athletes with ICDs.

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“…6 However, studies on children and adolescents with ICDs are limited. [7][8][9][10][11] DeMaso and colleagues 12 found changes in scores for anxiety, depression, family functioning, and quality of life (QoL) in pediatric patients with ICDs (20 patients). Sears and colleagues 13 examined a similar age group with ICDs and reported lower psychosocial and physical QoL scores compared with healthy children (60 patients).…”

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confidence: 99%

Psychiatric Functioning and Quality of Life in Young Patients With Cardiac Rhythm Devices

Webster

Panek²,

Labella

et al. 2014

Pediatrics

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BACKGROUND: Less is known about depression, anxiety and quality of life (QoL) in children and adolescents with pacemakers (PMs) and implantable cardioverter-defibrillators (ICDs) than is known in adults with these devices. METHODS: A standardized psychiatric interview diagnosed anxiety/depressive disorders in a cross-sectional study. Self-report measures of anxiety, depression and post-traumatic stress disorder were obtained. Medical disease severity, family functioning and QoL data were collected. A total of 166 patients were enrolled (52 ICD, 114 PM; median age 15 years). RESULTS: Prevalence of current and lifetime psychiatric disorders was higher in patients with ICDs than PMs (Current: 27% vs. 11%, P = .02; Lifetime: 52% ICD vs. 34% PM, P = .01). Patients with ICDs had more anxiety than a healthy population (25% vs. 7%, P < .01). Patients with ICDs and PMs had similar levels of depression as a healthy population (ICD 10%, PM 4%, reference 4%, P = .29). In multivariate analysis including a medical disease score, demographics, exposure to beta-blockers, activity limitations, hospitalizations, shocks and procedures, the type of device (PM versus ICD) did not predict psychiatric diagnoses when age at implantation and the severity of medical disease were controlled for. Patients with ICDs and PMs had lower physical QoL scores (ICD 45, PM 47.5, Norm 53, P ≤ .03), but similar psychosocial functioning scores (ICD 49, PM 51, Norm 51, P ≥ .16) versus a normal reference population. CONCLUSIONS: Anxiety is highly prevalent in young patients with ICDs, but the higher rates can be attributed to medical disease severity and age at implantation instead of type of device.

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Adolescents with Implantable Cardioverter Defibrillators: A Patient and Parent Perspective

Abstract: These findings have important implications for clinical practice and may help guide medical management for adolescents with ICDs and their families.

Cited by 47 publications

References 25 publications

Exploring the Discussion of Risk of Sudden Cardiac Death

Exploring the Discussion of Risk of Sudden Cardiac Death

Safety of Sports for Athletes With Implantable Cardioverter-Defibrillators

Psychiatric Functioning and Quality of Life in Young Patients With Cardiac Rhythm Devices

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