Title: 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
Funder: Department of Health and Social Care

Abstract: 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 &pound;186 to &pound;6,213 /person across different Primary Care Trusts (3)) reflect this. Research plan: The Programme consists of six workstreams: &bull; Workstream 1 refines and tests existing measures for Workstreams 3 and 4, implements necessary IT and support, and delivers training to participating sites. &bull; Workstream 2 utilises evidence from key stakeholders to inform effective casemix development and funding/commissioning models. &bull; 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. &bull; 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. &bull; Workstream 5 integrates findings from Workstreams 1 - 4, develops potential quality indicators and outcomes, and makes recommendations for casemix implementation and related funding models. &bull; Workstream 6 disseminates findings and maximises Programme benefit to the NHS. Projected outputs and dissemination: &bull; A national palliative care casemix classification for England, predictive of resource use for each level of patient complexity &bull; An easily-measurable Palliative Complexity Profile which supports rapid and relevant capture of casemix criteria &bull; A consistent, practicable, and detailed standard patient-level costing methodology for capturing and apportioning costs of specialist palliative care provision across settings &bull; A valid Palliative Resource Use Score to capture key resource use at patient-level &bull; Appropriate patient-centred outcomes and quality indicators to demonstrate high quality care across complexity &bull; 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 palliative care needs assessment, evaluative research, outcomes assessment, longitudinal study, cost-effectiveness studies, statistical analyses of large datasets, health service management, casemix development in rehabilitation, and casemix development in Australian palliative care. Justification of costs: Main costs are for i) sufficient researchers to collect patient-reported data from ill patients over time and across sites, plus detailed patient-level cost data, and ii) appropriate data/IT support and robust health economics input to support the Programme. Management/Governance: 1. Murtagh, Bausewein and Higginson (as Programme leads) meet monthly (fortnightly during workstream set-up) with the research team. This includes additional workstream leads (Daveson, Nicholson and Evans) when indicated. 2. The Programme Steering Committee meets every six months, for detailed progress updates, and to make recommendations for overall direction and strategy. 3. Murtagh, Bausewein, and Higginson share responsibility for i) full compliance with NHS Trust and College Information Governance processes, and ii) liaison with Department of Health partners (including Professor Mike Richards, National Cancer Director). Patient Public Involvement: Active patient and public involvement is: i) at Programme Steering Committee level, ii) via the Consumer Panel, and iii) in a more informal Patient/Public Group, to improve research quality through maximising relevance and benefit to patients and families. Normal 0 false false false EN-GB X-NONE X-NONE

Lay abstract: Background: In England, the hospice movement has provided a model of excellent care (palliative care) for those with advanced disease. However, there are marked inequities in provision of this care across England. Those older or with non-cancer, for instance, are less likely to receive excellent care. There are also major geographical variations in NHS provision (from &pound;186 to &pound;6,213 per person across different Primary Care Trusts (3)), resulting in often poor match between the needs of a patient/family, the resources provided to meet those needs, and the improvement in symptoms/quality of life achieved. Purpose: This research develops and tests a system (a casemix classification) to accurately capture the complex needs of patients with advanced disease, to better understand and quantify those needs, and to fairly allocate resources to meet them. It identifies ways to measure the actual improvements in symptoms/quality of life which patients and families experience, so that the quality and effectiveness of services is demonstrable to patients, families, commissioners and providers of care. This will drive better quality and more efficient care in last year of life. Methods: &bull; Workstream 1 refines measures of patient and family needs, and the resources used to deliver care. It sets up the necessary Information Technology, training for study sites, and formal ethical approvals for Workstreams 2 and 3. &bull; Workstream 2 consists of interviews with patients, families, service providers, and commissioners, to understand the challenges in receiving and delivering high quality care, to shape subsequent workstreams. &bull; Workstream 3 collects data from clinicians on the complexity and range of palliative care needs of patients in different settings (home/hospital/hospice), plus information on resource use, and potential casemix criteria. This will enable the casemix classification to be tested and developed. &bull; Workstream 4 tests the classification with patients/families for up to two years as they experience hospital or hospice admissions, and time at home, or in a care home. The classification is tested, and patient outcomes captured to assess quality of care. A smaller number of patients/families are interviewed about transitions from hospital to home (or vice versa) to better understand how transitions could be best negotiated and resourced. &bull; Workstream 5 integrates findings from Workstreams 1 - 4, recommends best ways to measure improvements in symptoms and quality of life, and makes recommendations for application of the classification. &bull; Workstream 6 disseminates findings and maximises Programme benefit to the NHS. Benefits: The Programme provides major patient and family benefits across England through improved matching of resources to needs at individual patient level, and providing, for the first time in palliative care, the ability to measure casemix-adjusted patient outcomes to demonstrate quality of care.

Research activity codes: 7.2 END OF LIFE CARE;8.1 ORGANISATION AND DELIVERY OF SERVICES
Health categories: GENERIC HEALTH RELEVANCE