Research to enable greater end-of-life choice for haematological cancer patients

Posted on 26 October 2011

University of York researchers have received funding from Marie Curie Cancer Care to carry out a three-year study into place of care and death in patients with haematological cancers.

The aim of the £270,000 study will be to discover why patients with haematological malignancies – diseases of the blood – are more than twice as likely to die in hospital compared with those suffering other forms of cancer.

The research will investigate concerns that patients may not be dying where they wish and health commissioners are funding costly end-of-life care in inappropriate acute hospital settings.

Being able to die in one's preferred place is considered to be an indicator of quality end-of-life care.

Dr Debra Howell, Department of Health Sciences

A team from the Epidemiology and Genetic Unit (EGU) in the University's Department of Health Sciences will investigate why patients are more likely to die in hospital. The researchers will also identify potential changes that could be made to enable patients to die at home if this is their preferred option.

Haematological malignancies are the fourth most frequently diagnosed cancers in both males and females in the developed world. The diseases are complex as they affect the entire age spectrum and exhibit marked differences in terms of presentation, treatment, progression and outcome. The behaviour and management of these diseases often involves intense and sustained contact with the haematology department.

Despite recent advances in treatment, survival for certain blood diseases, such as acute myeloid leukaemia, remains poor.

Dr Debra Howell, one of the lead researchers from the University’s Department of Health Sciences, said: "Being able to die in one’s preferred place is considered to be an indicator of quality end-of-life care. It is generally believed that the majority of people, including haematological patients, would prefer to die at home.

"Good end-of-life and palliative care is clearly important for these patients yet, according to the National Institute for Clinical Excellence (NICE), there is a lack of integration between haematology and specialist palliative care teams."

Previous systematic reviews by York's Epidemiology and Genetic Unit have indicated that haematology patients are not only twice as likely to die in hospital, but are also less than half as likely to have specialist palliative care or hospice treatment compared with those with other cancers.

Palliative care, the active holistic care of patients with advanced progressive illness, aims to achieve the best quality of life for patients and their families. Management of pain and other symptoms and provision of psychological, social and spiritual support are paramount.

Dr Howell said: "One of the key problems in addressing these challenges is a distinct lack of existing empirical research involving end-of-life and palliative care for people suffering these diseases. At York we have been addressing this issue since 2005 by conducting a number of studies. These projects are managed by a steering group of practitioners, researchers and patients."

The latest Marie Curie Cancer Care funded project is based within the existing infrastructure of the Haematological Malignancies Research Network (HMRN) established in 2004. HMRN is a specialist population-based registry, funded by Leukaemia and Lymphoma Research (LLR), which includes all patients newly diagnosed with a haematological malignancy within the Yorkshire and Humber and the Yorkshire Coast Cancer Network areas – more than 2,000 new diagnoses each year.

The project will combine the views of stakeholders with data from medical records so that an overview of the issues associated with place of death can be obtained. Qualitative interviews will be carried out with four groups of stakeholders – patients and their relatives or carers; bereaved relatives or carers; specialist practitioners in primary and secondary care (haematology and palliative care); and general practitioners in primary care (GPs and district nurses).

As the HMRN area is representative of the UK as a whole in terms of both demography and clinical practice, results can inform practice around the country.

Notes to editors:

The Haematological Malignancies Research Network (HMRN) is a collaborative venture between NHS practitioners, the Haematological Malignancy Diagnostic Service (which diagnoses all haematological malignancies in the area) and researchers at the University of York (who manage data collection and analysis). As part of the registry, routine demographic, prognostic, treatment and outcome data are collected on all patients, as well as place and cause of death. For further information visit www.HMRN.org
For further information on the University of York’s Department of Health Sciences visit www.york.ac.uk/healthsciences.
For further information on Marie Curie Cancer Care visit www.mariecurie.org.uk