Research led from the University of Leeds, has shown that the number of children and young adults in England with a 'life limiting condition'* is far higher than had previously been thought and is increasing year on year. As numbers continue to rise, this will place a growing burden on paediatric palliative care providers and young adult services, particularly in deprived areas.
The study, which is published in the journal Pediatrics, was a collaboration between the University of Leeds, Martin House Children's Hospice in Yorkshire, and the Children's Hospital, Cardiff. It was funded by the charity Together for Short Lives.
Experts agree that children who are born with or contract an illness that can shorten their life, and who may not reach adulthood, should have access to specialist palliative care. This can make an enormous difference to the quality of their life and to that of their family members.
Data on the use of children's hospice services is collected by Together for Short Lives. However, the total number of children who have received any form of specialist palliative care - or who might need it in the future - is not recorded nationally and local data is patchy. This has prompted concerns that health authorities may be underestimating the level of provision that is needed, leaving existing services under-resourced and overstretched.
To address this gap in knowledge, researchers took NHS data on children's admissions to hospitals in England from 2000 until 2010 and used an internationally recognised coding method to classify the medical conditions being treated. They found that for 2010, the prevalence of life limiting conditions in under-19s was 32 in 10,000 – exactly double the figure previously reported. From this, they estimate that there are about 40,000 children in England who are currently living with a life limiting condition.
The results showed a steady increase in the number of children living with a life limiting condition, particularly in the 16-19 age group. This suggests that the growing need for support associated with these conditions is being driven by longer survival times rather than a rise in the incidence of disease. The prevalence of life limiting conditions was also notably higher in some ethnic minority populations and areas of socio-economic deprivation.
University of Leeds researcher Dr Lorna Fraser, who led the study, said: "Children and teenagers with life limiting medical conditions will often need many years of specialist palliative care before they reach the end of their life, making it all the more important that their needs are not overlooked. Our study has confirmed doctors' suspicions and identified an escalating need for specialist paediatric care services. It is vital that health authorities now take this message on board and plan accordingly."
Dr Jan Aldridge, Consultant Clinical Psychologist at Martin House Children's Hospice, and one of the co-authors of the research, said: "Significant numbers of children with life-limiting conditions are living longer now, thanks to advances in medical care, but for many such children life gets harder as they get older. Statutory services are either non-existent or struggle to meet the needs of these older teenagers and young adults. At the moment, these children and their families place great value on the all-round support package provided by hospices such as Martin House, which help to address their medical, social and emotional needs. This model of specialist holistic care is one that health authorities and other services might draw upon."
Barbara Gelb, CEO of the UK children's palliative care charity, Together for Short Lives, added: "This study affords a real opportunity to better understand need and should help commissioners and service providers alike to better plan and deliver sustainable services when and where they are most needed. As the study shows, more young people with long term conditions are living longer; however we know that the specialist services they need are not meeting demand. Although there are some excellent services for young people; there are still major gaps in service provision and young people struggle to find appropriate care, housing, education and the work and social opportunities that they deserve."
Contact: Paula Gould, University of Leeds Communications & Press Office: Tel +44 113 343 8059, email email@example.com
* Life-limiting conditions (LLC) in children have been defined as conditions for which there is no reasonable hope of cure and from which children will die. Life-threatening conditions are those for which curative treatment may be feasible but can fail, such as cancer. In this study, LLC also included life-threatening conditions.
Notes to editors:
1. A copy of the paper [L Fraser et al. Rising National Prevalence of Life-Limiting Conditions in Children in England, Pediatrics 2012;129:1-7 (www.pediatrics.org/cgi/doi/10.1542/peds.2011-2846)] is available on request.
2. The UK Government's national strategy for children's palliative care, Better care, Better Lives was published in February 2008 (http://goo.gl/CLYF0).
3. The UK Department of Health is seeking to set up a new system for funding palliative care for adults and children. A pilot programme involving approximately ten organisations across the UK is expected to begin in April 2012 (http://goo.gl/gKIOE).
4. One of the UK's largest medical, health and bioscience research bases, the University of Leeds delivers world leading research in medical engineering, cancer, cardiovascular studies, epidemiology, molecular genetics, musculoskeletal medicine, dentistry, psychology and applied health. Treatments and initiatives developed in Leeds are transforming the lives of people worldwide with conditions such as diabetes, HIV, tuberculosis and malaria. www.leeds.ac.uk5. Together for Short Lives is the only charity working across the UK to help ensure that every child and young person unlikely to reach adulthood, and their family, has the best possible care and support whenever and wherever they need it. As the UK voice for those children and young people unlikely to reach adulthood and their families, Together for Short Lives:
Q&A1. Is there any explanation as to why this report appears to indicate a specific increase in the overall numbers of life limiting and life threatening conditions? This appears contrary to earlier reports published by the charity ACT (2009) and the Department of Health (2007), although both documents suggested that there might be more children and young people with palliative care needs.
Paula Gould | EurekAlert!
Antarctic Ice Sheet mass loss has increased
14.06.2018 | Technische Universität Dresden
WAKE-UP provides new treatment option for stroke patients | International study led by UKE
17.05.2018 | Universitätsklinikum Hamburg-Eppendorf
In a recent publication in the renowned journal Optica, scientists of Leibniz-Institute of Photonic Technology (Leibniz IPHT) in Jena showed that they can accurately control the optical properties of liquid-core fiber lasers and therefore their spectral band width by temperature and pressure tuning.
Already last year, the researchers provided experimental proof of a new dynamic of hybrid solitons– temporally and spectrally stationary light waves resulting...
Scientists from the University of Freiburg and the University of Basel identified a master regulator for bone regeneration. Prasad Shastri, Professor of...
Moving into its fourth decade, AchemAsia is setting out for new horizons: The International Expo and Innovation Forum for Sustainable Chemical Production will take place from 21-23 May 2019 in Shanghai, China. With an updated event profile, the eleventh edition focusses on topics that are especially relevant for the Chinese process industry, putting a strong emphasis on sustainability and innovation.
Founded in 1989 as a spin-off of ACHEMA to cater to the needs of China’s then developing industry, AchemAsia has since grown into a platform where the latest...
The BMBF-funded OWICELLS project was successfully completed with a final presentation at the BMW plant in Munich. The presentation demonstrated a Li-Fi communication with a mobile robot, while the robot carried out usual production processes (welding, moving and testing parts) in a 5x5m² production cell. The robust, optical wireless transmission is based on spatial diversity; in other words, data is sent and received simultaneously by several LEDs and several photodiodes. The system can transmit data at more than 100 Mbit/s and five milliseconds latency.
Modern production technologies in the automobile industry must become more flexible in order to fulfil individual customer requirements.
An international team of scientists has discovered a new way to transfer image information through multimodal fibers with almost no distortion - even if the fiber is bent. The results of the study, to which scientist from the Leibniz-Institute of Photonic Technology Jena (Leibniz IPHT) contributed, were published on 6thJune in the highly-cited journal Physical Review Letters.
Endoscopes allow doctors to see into a patient’s body like through a keyhole. Typically, the images are transmitted via a bundle of several hundreds of optical...
13.06.2018 | Event News
08.06.2018 | Event News
05.06.2018 | Event News
22.06.2018 | Materials Sciences
22.06.2018 | Earth Sciences
22.06.2018 | Life Sciences