A Palliative Care Outcomes Registry
Research type
Research Database
IRAS ID
269821
Contact name
Fliss Murtagh
Contact email
Research summary
Developing a Palliative Care Outcomes Registry
REC name
East of England - Cambridge Central Research Ethics Committee
REC reference
20/EE/0188
Date of REC Opinion
16 Sep 2020
REC opinion
Further Information Favourable Opinion
Data collection arrangements
This Registry will store aggregated Patient-Centered Outcomes Measurement (PCOM) data. PCOM’s are brief, well-tested questionnaires which provide healthcare professionals with information from a person’s own perspective about their symptoms and well-being. These measures include: Palliative Phase of Illness, Integrated Palliative care Outcomes Scale (IPOS), Australia-modified Karnofsky Scale (AKPS), Views on Care, and Barthel Index for Activities of Daily Living. This data is routinely collected by healthcare professionals and is pseudonymised by participating palliative care services before being submitted to the Registry.
Research programme
Through developing and implementing this Palliative Care Outcomes Registry, we will drive systematic improvement in patient outcomes, thus improve the quality of palliative care, across England. We will do this in two ways: (a) Quality Improvement of Palliative Care Services. This will entail providing feedback of each sites own outcomes data, analysed by setting/team, including: • time in unstable Phase (aiming to reduce the time patients spend in urgent and acute need) • proportion of moderate/severe symptoms (such as pain, breathlessness and fatigue) which are improved during the episode of care • proportion of absent/mild symptoms which are prevented from developing during the episode of care (b) Research. Registry-related research, including: • establishing which models of palliative care are associated with best outcomes, and for what cost. • mapping regional population provision of specialist palliative care to accurately report total number of patients who receive specialist palliative care across geographical patches and settings. Until now, this objective has not been possible. • Mapping the case-mix of patients as they enter specialist palliative care.
Research database title
Developing a Palliative Care Outcomes Registry
Establishment organisation
University of Hull
Establishment organisation address
Cottingham Road
Hull
HU6 7RX