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Cardiac devices decreased QOL for children and parents
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The presence of cardiac rhythm devices appears to negatively affect the lives of pediatric patients and their parents, researchers found in a study published in Circulation: Arrhythmia & Electrophysiology.
Richard J. Czosek, MD, lead author and assistant professor of pediatrics at the Cincinnati Children’s Hospital Medical Center in Ohio, and his colleagues evaluated 173 children aged 8 to 18 years (median age, 13 years) who had a pacemaker (n=40) or an implantable cardioverter defibrillator (n=133) to assess their quality of life (QOL) compared with other children with congenital heart disease who did not have implanted cardiac devices and with healthy children.
Patient-parent pairs completed the Pediatric Quality of Life Inventory (PedsQL) and Pediatric Cardiac Quality of Life Inventory (PCQLI). QOL outcomes in device patients were compared with healthy controls and patients with various forms of congenital heart disease.
Compared with healthy children, those with cardiac devices and their parents had significantly lower PedsQL scores. These patients also reported lower QOL than children without cardiac devices who had mild forms of congenital heart disease, with PCQLI scores that were on par with those with more severe congenital heart disease. Children with an ICD tended to have lower QOL scores than patients with pacemakers, according to study results.
Key drivers of patient QOL were presence of ICD and congenital heart disease. Self-perception, self-worth and athletic capability were keys drivers of QOL in youth, while the child’s behavioral issues were associated with lower QOL for parents.
"These findings should encourage us to consider the negative impact of devices, particularly defibrillators, on pediatric patients; and to develop strategies to mitigate these effects," Czosek said in a press release. "Whether these effects on quality of life can be reduced through the use of psychotherapy needs to be assessed."
For more information:
Czosek RJ. Circ Arrhythm Electrophysiol. 2012;doi:10.1161/CIRCEP.112.973032.
Disclosure: One researcher reports receiving paid honorarium as a speaker for St. Jude fellow conference. Institutional fellow training grant supported by Medtronic and St. Jude. All other researchers report no relevant financial disclosures.
Perspective
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Michael Gewitz, MD
This study reminds us that, in addition to providing clinical care for our complex patients, we must also help our patients cope with the clinical aspects of the care that we provide. We know that the best care we can provide is family-centered care, where the patients and the families are involved together, and these study results were interesting because both parents and offspring were involved. Both were impacted, although in different ways. For the parents, it was more about how their children were acting out in response to the devices and behavioral changes. For the children, it was mostly how they perceived themselves. This study demonstrated that there is often a disconnect between how the device is functioning and the patient's QOL. The device could be functioning perfectly but the patient may still have important issues that impact their overall health.
These are lifelong changes that we are inducing in a very vulnerable age group. This report serves as a reminder to us that what we are doing is going to have a lifelong impact not just on [the patient’s] physiology but on their psychology as well.
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