C-CHANGE: Delivering high quality and cost-effective care across the range of complexity for those with advanced conditions in the last year of life

Aim: To develop and validate a patient-centred, nationally applicable casemix classification for adult palliative care provision, which i) validly and reliably reflects patient and family needs, ii) captures patient complexity across different advanced conditions and settings, and iii) enables the delivery of better quality and more efficient care in the last year of life, linked to appropriate outcomes and indicators of quality of care. Objectives: 1. To refine and test a patient-centred palliative care casemix classification, based on individual patient and family needs, for adults with both cancer and non cancer conditions in the last year of life. 2. To prospectively validate this palliative care casemix classification in England by testing how accurately the classes capture individual patient and family needs, and resource use, over time and across conditions and settings. 3. To refine and test a summary measure of patient complexity which accurately reflects patient and family needs, is valid and reliable, and captures the relevant casemix criteria for individual patients and their families. 4. To use this classification and the related evidence to inform per-patient funding models, and recommend how these are best driven by patient and family needs and quality of care, as well as costs. 5. To identify and recommend casemix-adjusted quality and outcome indicators, to improve quality and efficiency of care. Background and rationale: Currently, there are marked inequities in palliative care provision across England (3) and limited ways to assess the quality and efficiency of that care. There is often mismatch between i) the palliative care needs of any one patient and family, ii) the resources provided to meet those needs, and iii) corresponding patient-centred outcomes achieved. Major variations in NHS spend on palliative care (from £186 to £6,213 /person across different Primary Care Trusts (3)) reflect this. Research plan: The Programme consists of six workstreams: • Workstream 1 refines and tests existing measures for Workstreams 3 and 4, implements necessary IT and support, and delivers training to participating sites. • Workstream 2 utilises evidence from key stakeholders to inform effective casemix development and funding/commissioning models. • Workstream 3 is a prospective multi-centre study over 12 months, collecting proposed casemix criteria and resource use data. It validates the Palliative Resource Use Score, and tests/refines the Australian palliative care casemix classification in England. • Workstream 4 is a multi-centre cohort study over 24 months, in which the palliative care casemix classification is prospectively validated with patients, over time, and across the range of complexity and settings. • Workstream 5 integrates findings from Workstreams 1 - 4, develops potential quality indicators and outcomes, and makes recommendations for casemix implementation and related funding models. • Workstream 6 disseminates findings and maximises Programme benefit to the NHS. Projected outputs and dissemination: • A national palliative care casemix classification for England, predictive of resource use for each level of patient complexity • An easily-measurable Palliative Complexity Profile which supports rapid and relevant capture of casemix criteria • A consistent, practicable, and detailed standard patient-level costing methodology for capturing and apportioning costs of specialist palliative care provision across settings • A valid Palliative Resource Use Score to capture key resource use at patient-level • Appropriate patient-centred outcomes and quality indicators to demonstrate high quality care across complexity • Peer-reviewed publications and national/international presentations representing all aspects of this Programme Relevant expertise and experience of the research team: The research team has expertise in pal