Statement in response to Open Heart online journal report

Children’s Heart Federation supports a focus on survival outcomes and measures of morbidity for heart children

The Children’s Heart Federation supports the recommendation to focus on survival outcomes for heart children in a recent online report published in ‘Open Heart’. Despite the rise in the complexity of cases, the survival of children with congenital heart conditions is far greater today than a decade ago. Many parents expect their child to live but want to know what their quality of life will be.

The charity is pleased the report acknowledges that, “The very low mortality rates at 30 days must shift our focus now towards measures of morbidity, longer term survival outcomes (such as survival to 90 days or 1 year) and functional outcomes, which, although of great importance to patients and their families, are less well delineated, and furthermore may provide evidence on the comparative long term benefits of different surgical strategies and models of care.”

Anne Keatley-Clarke, Chief Executive, Children’s Heart Federation, says; “Mortality calculations are no longer enough to measure the lifetime effects of treatment on heart children. It is essential that reliable and comprehensive measures are put in place to optimise the outcome for these children.”

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Further information:
Emma Pelling,  t: 020 7624 7533   m: 07958 558172   e: emma@pellingpr.co.uk
www.chfed.org.uk   Twitter: @chfed

Notes to Editors:

The Children’s Heart Federation (CHF) is the UK’s leading children’s heart charity and an umbrella organisation for 21 member groups who support heart children and their families. CHF supports families through its information service, small grant programmes, peer support events and provision of equipment. The charity also lobbies for changes to the health, social care and education systems for the benefit of heart families.