Written by Gianluca Quaglio with Sarah McCormack,
Approximately one in seventy children face critical illness or injury each year in Europe. While there has been substantial improvement in the survival rates of critically ill children in EU Member States over the past three decades, more can be done. Opening a workshop on ‘Improving Outcomes for Critically Ill Children: Innovation and Research Translated to Save Lives’ on 29 June 2016, hosted by the Science and Technology Options Assessment (STOA) Panel, MEP and STOA Chair Paul Rübig highlighted that standards of care need to be raised in Europe.
Moderating the workshop was Professor Peter Rimensberger from the European Critical Care Foundation (ECCF), an organisation that works specifically to improve the care of critically ill patients. The event was co-organised by the European Society of Paediatric of Neonatal Intensive Care (ESPNIC), who are dedicated to promoting and advancing the art and science of paediatric and intensive care.
Leading experts in the field addressed the workshop, including Professor Dan Longrois, board member of ECCF and chair of the National Anaesthesiologists Societies Committee. Professor Longrois explained that ECCF focuses on improving treatment at that crucial point in time when it can make a ‘critical’ difference to mortality and morbidity. ECCF campaigns to trigger action throughout Europe to overcome barriers that affect the way care is delivered.
Paolo Biban from the World Federation of Paediatric Intensive and Critical Care Societies, and Verona University Hospital in Italy, underlined that appropriately trained and equipped staff, and specially designated facilities, where parents are constantly involved are vital to the care of critically ill children. However, it was acknowledged that, as a highly specialised service with a relatively small number of child patients, paediatric intensive care is very demanding in terms of resources and staffing qualifications.
Shelley Marsh, a parent representative from the Paediatric Intensive Care Families Group, made a deeply moving speech, sharing her own experience as a mother of a child in intensive care. Highlighting the challenges her family faced, and the support they received, Mrs Marsh brought the issues vividly to life in explaining how specialist staff across four intensive care units saved her daughter’s life.
Joe Brierley, medical president of ESPNIC and consultant in Paediatric Intensive Care and Bioethics in Great Ormond Street Children’s Hospital, examined the dangers of sepsis. Dr Brierley explained that cases of European children with sepsis report mortality rates of 10-20%. The risks of severe sepsis increase due to factors such as chemotherapy and lack of immunisation. Tackling sepsis successfully is highly dependent on early recognition and treatment by trained professionals. Dr Brierley urged better education regarding the dangers and symptoms of sepsis for both healthcare professionals and parents.
Padmanabhan Ramnarayan, consultant with the Children’s Acute Transport Service at Great Ormond Street Hospital for Children, explained the importance that transport services for critically ill children plays in their treatment outcomes. The existence of specialised teams has been found to improve survival rates. Dr Ramnarayan stressed that data gathering on specialised transport teams, such as that carried out by PICANet, will feed into service improvements.
Dr Karin Becke, chair of the Scientific Subcommittee on Paediatric Anaesthesia of the European Society of Anaesthesiology (ESA) and head of department of Anaesthesia and Intensive Care Medicine at Cnopf Children’s Hospital, examined safety issues regarding the use of anaesthesia in children. Acknowledging that incidences of mortality and morbidity in paediatric anaesthesia is higher than that of adults, Dr Becke noted that the risk rises significantly the younger the child, and the less experienced the team. ESA has a paediatric anaesthesia network across 33 countries, providing a foundation for the establishment of unified standards of practice. It also provides the building blocks for a paediatric anaesthesia registry.
Registry-driven studies have also contributed to the improvement of cancer treatment, the second largest cause of death in children. Cases of childhood cancer are on the increase, from 13 children per 100 000 in 1975 to 17 children per 100 000 in 2005. Franco Locatelli, head of Paediatric Haematology and Oncology in the Bambino Gésu Hospital in Rome, urged the EU to invest in innovative, targeted therapies for cancer.
The treatment of critically ill children naturally requires medicines, however less that 8% of pharmaceutical research funding goes to paediatrics. Dick Tibboel, chair of Pharmacology of ESPNIC and director of ICU at the Sophia Children’s Hospital in Rotterdam explained that the industry is reluctant to invest in paediatrics – associated with high development costs and low benefits. Evidence-based pharmacotherapy for critically ill children requires better industry collaboration and data transfer freedom within academia.
The differences in quality of paediatric intensive care across Europe are unwarranted. To fix the situation, real-world data is needed, according to Professor Jan Hazelzet, Chief Medical Officer of Erasmus University, and past medical president of ESPNIC. Professor Hazelzet presented the concept of Value-Based Health Care, which seeks to increase the ‘value’ – the best possible outcome from the perspective of the patient at the lowest possible cost – of a therapy. Professor Hazelzet also stressed that improving patient outcomes requires gathering of data.
Summing up, Paul Rübig, reiterated the importance of research in advancing the treatment of critically ill children, and called for greater collaboration between researchers and policy-makers to help improve the outcomes for critically ill children.
If you missed the event, the proceedings are available via webstream.