The new data will help health authorities plan palliative care resources more effectively as the research shows, for the first time that children, young people and their families may need the care and support provided by a hospice for varying amounts of time, in some cases for more than 20 years.

Lead researcher from the University's Paediatric Epidemiology Group, Lorna Taylor said: "One of the most interesting results is the length of survival time for children and young people, indicating this service is concerned with much more than the end of life care associated with an adult hospice.

Lorna Taylor continues: "Over a 20 year period 1,554 children from birth to 19 years were referred to Martin House.  Of the 89.5% accepted, the average survival time was more than five years."

Based in Boston Spa, West Yorkshire, Martin House opened in 1987 to care for children and young people with life threatening or life limiting conditions.  At the time it was only the second hospice of its kind in the world and provided specialists with a model of palliative care for children and young adults that has since been copied nationally and internationally.   Martin House provides an inclusive service representing the diversity of the community in North and West Yorkshire.

With funding from Martin House and using a unique archive, started in 1987, the research team had access to more than two decades of data, on all children referred to the hospice up until May 2008.  

Whilst palliative care for children and young people is a growing speciality, up to now there has been little available information to help health authorities plan and prioritise future resources effectively.  

Following the recommendations of a report published in 2007, highlighting the lack of available information, the UK Department of Health has identified research in palliative care services for children and young people as a priority.

Jan Aldridge, Consultant Clinical Psychologist at Martin House explains: "Part of our role at Martin House is to be a resource to the wider community so that health professionals and families from all social and ethnic backgrounds know we are here and what we do.

"The trustees of Martin House felt it was their responsibility to support this research and it is gratifying to know that the data shows we work collaboratively with families to support them on their challenging and moving journeys, sometimes over many years."

The research study took two years and was undertaken in partnership between the University of Leeds and Martin House.
For further information go to:
./medhealth/light/research/DoE/paediatric/index.html

Palliative Care in Yorkshire UK 1987-2008; survival and mortality in a Hospice is published in Archives of Disease in Childhood.
http://adc.bmj.com/cgi/rapidpdf/adc.2009.158774v1

For further information or interviews contact:
Ruth Badley, Northern Lights PR on 01423 562 400 or
University of Leeds Press Office, 0113 3434031, c.s.ryan@leeds.ac.uk

Notes to editors

 The 2008 Research Assessment Exercise showed the University of Leeds to be the UK's eighth biggest research powerhouse. The University is one of the largest higher education institutions in the UK and a member of the Russell Group of research-intensive universities. The University's vision is to secure a place among the world's top 50 by 2015. ./

With more than 6,000 students, 1,500 staff and annual research income topping £35m, the Faculty of Medicine and Health at Leeds is bigger than many entire universities. Leeds has one of the largest medical and bioscience research bases in the UK, and is an acknowledged world leader in cancer, cardiovascular, psychiatric, genetic and musculoskeletal research. Treatments developed in Leeds are transforming the lives of people around the world living with conditions such as HIV, TB, diabetes and malaria.

 The Leeds Institute of Genetics, Health and Therapeutics (LIGHT) is the home of internationally competitive translational research into common chronic disorders such as cardiovascular diseases, diabetes, cancer and neurodegenerative disorders, and supports specialised undergraduate and postgraduate studies, with the overall aim of improving patient care and public health

Within LIGHT the Paediatric Epidemiology Group incorporates both investigations of the molecular epidemiology and environmental aetiology of chronic diseases as well as a range of health services research. The patterns and causes of the most common paediatric and adolescent chronic conditions, such as cancer, diabetes and glomerular disease, are areas of study, as is the delivery of care to these children and young people. In addition, the group is involved in research into the delivery of intensive care to critically ill children by the NHS, with a specific interest in those with traumatic brain injuries

 Martin House Hospice care for Children and Young People with life-threatening and progressive life limiting illnesses, and provide support to their families. The hospice provides care for children and young people throughout the Yorkshire region. This includes the facility of a purpose- built hospice in Boston Spa, Wetherby, as well as the options of care in the community and in the children's own homes.

Martin House hospice relies almost entirely on donations and fund-raising to raise around £4.2 million a year to provide this vital care and support for the children and their families.