University of Leeds and Martin House collaborate to study children’s’ palliative care data

A partnership between researchers at the University of Leeds and Martin House Children's Hospice has resulted in the world's first comprehensive study of palliative care received by children and young people.

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.