Extrait

Background and study aims In England, the hospice movement has provided a model of good palliative (end of life) care for those with advanced progressive (worsening) disease. However, the care offered around the country can differ greatly. Older people or those with non-cancerous conditions, for instance, are less likely to receive palliative care. There are also major geographical variations in NHS provision often resulting in a mismatch between the palliative care needs of a patient/family, the resources provided to meet those needs, and patient health outcomes achieved. Casemix classifications provide the health care sector with a consistent method of classifying types of patients, their treatment and associated costs. The aim of this study is to follow participants being treated at a range of different places in order to develop a casemix classification for palliative care will enable these inequities in provision to be addressed. Who can participate? Adults who are receiving specialist palliative care across inpatient (hospice and hospital), community and outpatient settings, and their family carers. What does the study involve? Participants and their family carers are followed by the research team for up to 12 months. Patient participants and their family carers provide data on their symptoms and concerns, whether these are addressed, and other important background information. They also provide inofmration about how they previously used services. The study also includes a post-bereavement survey to family carers where appropriate, to identify symptoms and concerns immediately prior to death, and also family support needs after death. Clinicians collect data about the patient participants including background and health information, episode start and end data, case-mix variables (such as phase of illness, functional status and problem severity), alongside information on patient-level resource use in specialist palliative care settings. These data are linked to patient participant data, encrypted and transferred to the central database and analysed to understand how to better match patient-level resource use to needs. What are the possible benefits and risks of participating? Participants will benefit from improved matching of resources to needs at an individual level. There are no notable risks involved with participating. Where is the study run from? Inpatient, community and outpatient settings throughout England (UK) When is the study starting and how long is it expected to run for? February 2016 to May 2018 Who is funding the study? National Institute for Health Research (UK) Who is the main contact? Dr Fliss Murtagh [email protected]

Critère d'inclusion

• Specialty: Cancer, Primary sub-specialty: Palliative and Supportive Care; UKCRC code/ Disease: Other/ Ill-defined and unknown causes of mortality

Liens

• isrctn