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Key studies

GUIDE_Care

Projects on place of death

Geographical and Temporal Variations in Place of Death in England (1984-2010): Understanding Trends and Associated Factors to Improve End-of-life Care (GUIDE_Care)

About the project

The GUIDE_Care project is a population-based study, set up to describe the variations in place of death and the factors that affect these in order to guide ways to improve the quality of care at the end-of-life.

The Office for National Statistics individual-level death registration data in England, for the period 1984 – 2010, was used for this project. Analyses focusing on different aspects in end-of-life care have been done on the data for all causes as well as for selected causes of death, and we are also carrying out and planning further detailed analysis on subpopulations.

We began work on the GUIDE_Care Children and Young People project in July 2013. The project will analyse patterns and changes to end of life care for children and young people, and provide recommendations for service providers and policy makers to help improve care.

GUIDE_Care Services (NIHR HS&DR Project: 14/19/22)   01/07/15 – 30/09/17.    Geographical understanding of variation in place of death: the role of care services and end of life care improvement

Investigators

Dr Gao Wei (KCL, Joint lead Principal Investigator)

Professor Irene Higginson (KCL, Joint lead Principal Investigator)

Professor Julia Verne (Public Health England Knowledge & Intelligence South West)

Dr Emma Gordon/Claudia Wells/Dr Jamie Jenkins (09/16 -) (Office for National Statistics)

Dr Giovanna Polato (Care Quality Commission)

Researchers

Dr Emeka Chukwusa (KCL, Research Associate)

Ms Rebecca Wilson (KCL, Research Assistant)

Project Advisory Group Members
  • Tony Bonser (Expert by experience/Service user, National Cancer Research Institute)
  • Kate Heaps (Chief Executive, Greenwich & Bexley Hospice)
  • Ms Katie Lindsey/Ms Nicola Bowtell (03/16 - ) (Programme manager, PHE, National End of Life Care Intelligence Network)
  • Dr Catherine Millington-Sanders (Marie Curie National Clinical End of Life Care Champion, RCGP)
  • Prof. Myfanwy Morgan (Health Service Research, KCL)
  • Mrs Carolyn Morris (Expert by experience/Service user, National Cancer Research Institute)             
  • Andy Pring (Senior Data Analyst, PHE)
  • Sarah Russell (Head of Research and Clinical Innovation, Hospice UK)
  • Jane Smith (General public member)
  • Dr Ros Taylor (National Director for Hospice Care, Hospice UK)
  • Paula Young (Patient member of the Council of Governors, Guy’s and St Thomas NHS Foundation Trust)     

The GUIDE_Care Services project aims to evaluate the role of service factors in place of death, to inform national and local end of life care improvement.

This follow on study builds on GUIDE_Care findings to investigate the potential role of service factors, provide national and local data to improve end of life care and better meet patient and family preferences. 

The aims of the project are:

  • To evaluate the role of service factors in place of death, to inform national and local end of life care improvement
  • To produce Geographic Information Systems (GIS) maps to visualise patient and service factors adjusted geographical variation in place of death  
  • To explore the inter-relationship of service and patient factors with place of death

GUIDE_Care Children & Young People project (Marie Curie Cancer Care, 01/07/13 – 30/06/14)

Investigators
  • Dr Gao Wei (KCL, PI)
  • Professor Irene Higginson (KCL, co-PI)
  • Professor Janet Peacock (KCL)
  • Professor Anne Greenough (KCL)
  • Dr Julia Verne (PHE Knowledge & Intelligence South West)
  • Mr Myer Glickman (ONS)
  • Mrs Carolyn Morris (user representative)
Researcher

Miss Joanna Davies (KCL, Research Assistant)

Project Advisory Group Members
  • Tony Bonser (user representative)
  • Dr Shaheen Khan (Guy’s Hospital)
  • Dr Jonathan Koffman (KCL)
  • Dr Joanna Laddie (Consultant in Children’s Palliative Medicine)
  • Katie Lindsay (National End of Life Care Intelligence Network, Public Health England)
  • Roberta Lovick (user representative)
  • Tariq Malik (PHE Knowledge & Intelligence South West)
  • Dr Julie Messer (ONS)
  • Andy Pring (PHE Knowledge & Intelligence South West)

GUIDE_Care (NIHR HS&DR, 01/04/11 – 30/04/13)

Investigators
Researcher

Mr Yuen King Ho (KCL, Research Assistant)

Project Advisory Group Members
  • Tony Bonser (user representative)
  • Dr Shaheen Khan (Guy’s Hospital)
  • Dr Jonathan Koffman (KCL)
  • Katie Lindsay (National End of Life Care Intelligence Network)
  • Roberta Lovick (user representative)
  • Tariq Malik (PHE Knowledge & Intelligence South West)
  • Dr Julie Messer (ONS)
  • Andy Pring (PHE Knowledge & Intelligence South West)
  • Stafford Scholes (user representative)
  • Dr Katherine Sleeman (KCL)

Publications

Peer Reviewed Journal Articles:
  • Sleeman KE, Davies JM, Verne J, Gao W, Higginson IJ. The changing demographics of inpatient hospice death: Population-based cross-sectional study in England, 1993-2012. Palliat Med. 2015 May 19. pii: 0269216315585064. [Epub ahead of print] PubMed PMID: 25991729.http://www.ncbi.nlm.nih.gov/pubmed/25991729

  • Evans CJ, Ho YK, Daveson BA, Hall S, Higginson IJ on behalf of the GUIDE_Care project. Place and Cause of Death in Centenarians: A Population-Based Observational Study in England, 2001 to 2010. PLoS Med. 2014;11(6):e1001653
  • Gao W, Ho YK, Verne J, Glickman M, Higginson IJ; GUIDE_Care project. Changing patterns in place of cancer death in England: a population-based study. PLoS Med. 2013;10(3):e1001410
  • Koffman J, Ho YK, Davies JM, Gao W, Higginson IJ. Does ethnicity affect where people with cancer die? A population based 10 year study. PLoS One. 2014 April. (ECollection 2014 ahead of print).
  • Sleeman KE, Ho YK, Verne J, Gao W, Higginson IJ on behalf of the GUIDE_Care project. Reversal of English trend towards hospital death in dementia. A population-based study of place of death and associated individual and regional factors, 2001-2010. BMC Neurology. 2014; 14:59
  • Sleeman KE, Ho YK, Verne J, Glickman M, Silber E, Gao W, Higginson IJ; on behalf of the GUIDE_Care Project. Place of death, and its relation with underlying cause of death, in Parkinson's disease, motor neurone disease, and multiple sclerosis: A population-based study. Palliat Med. 2013; 27(9): 840-846
Conference Abstracts:
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