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Children with heart devices have reduced quality of life

Children with implanted heart-rhythm devices and their parents suffer from a lower quality of life compared with their healthy counterparts, and may benefit from psychotherapy, according to a study1 published recently in Circulation: Arrhythmia & Electrophysiology.

Researchers at the Cincinnati Children’s Hospital Medical Center studied 173 children with either a pacemaker (40 patients) or implanted defibrillator (133 patients) to assess their quality of life compared to other children with congenital heart disease and to healthy children. The children, aged 8–18 years old, and their parents completed quality of life questionnaires.

Compared with healthy children and their parents, children with heart devices and their parents reported significantly lower quality of life scores. Likewise, their scores were also lower than those of children with mild congenital heart disease. However, their quality of life scores were similar to those for children with more severe heart disease but no device.

For children, self-perception, self-worth, and athletic capability affected quality of life. For parents, their child’s behaviour was the biggest factor related to quality of life. Children with an implantable defibrillator also tended to have lower quality of life scores than those with pacemakers.

Jan Till

Dr Jan Till (Royal Brompton, London)

“These findings should encourage us to consider the negative impact of devices, particularly defibrillators, on paediatric patients; and to develop strategies to mitigate these effects,” said study author Dr Richard Czosek (Cincinnati Children’s Hospital Medical Center, Ohio, USA). “Whether these effects on quality of life can be reduced through the use of psychotherapy needs to be assessed.”

Dr Jan Till, Consultant paediatric electrophysiologist at the Royal Brompton, London, spoke to BJC Arrhythmia Watch: “In the UK we are implanting more devices in children. We remain reluctant to implant – every case is carefully considered and every alternative option investigated, but in some children a defibrillator is absolutely needed. Devices do save lives.”

“We recognise the negative effect they can have on quality of life. Children experience far more problems with devices than their adult counterparts and these adverse events can significantly affect quality of life. There is an increased risk of lead fracture and inappropriate shock, and repeated inappropriate shocks can be devastating.”

“We carefully counsel every family before implantation. All members of the paediatric electrophysiology team are involved including the doctors and specialist nurse. We have a policy of early referral to the paediatric psychology team who have  a lot experience of the impact of defibrillators in childhood. One of the major problems is acceptance back into school, as not only many peer group members but teachers can be worried. Our specialist nurse goes out into the community to talk, educate and counsel. We are recognised nationally as having an extremely comprehensive service.”

References

1. Czosek RJ, Bonney WJ, Cassedy A, et al. Impact of cardiac devices on the quality of life in pediatric patients. Circ Arrhythm Electrophysiol 2012.

Published on: December 20, 2012

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