Health
Measuring individual-level outcomes
Measuring individual-level outcomes for babies, children, young people and adults with palliative and end-of-life care needs – considering assessment, digital capture and reporting.
Background:
- Measuring individual-level outcomes is essential to ensure that every baby, child, young person and adult who needs palliative care or care at the end of life has timely, equitable access to the support and care they need.
- Individual-level person-centred outcome measures capture the effect of interventions and care on health status and wellbeing of people affected by life-limiting illness and their families.
- In developing an overview of individual-level outcome measures to understand how patient outcomes can be measured and monitored, we will consider (i) non-specialist and (ii) specialist palliative care, (iii) babies, children and young people and (iv) adults, recognising that each is at different stages of development.
- In addition, we will account for differences in community-based care (multiple service providers and their integration) and hospital care (single provider), as these settings will have distinct and different structural and digital infrastructures.
Aims
- To develop a comprehensive understanding of whether and how outcome measures are being or can be used in palliative care and for people at the end of life, including the use of digital technologies, to support high-quality, person-centred care across settings and populations.
- To develop policy-relevant recommendations on how outcome measurement can be used to assess, monitor and improve the quality of palliative care, and care at the end of life, across settings.
Methods
A multi-method approach will be used, comprising two phases:
- Phase 1: State of the science report: This will provide an overview of existing and emerging evidence on measuring individual-level outcomes in palliative care and care at the end of life, for babies, children, young people and adults, as well as in general and in specialist palliative care and in different settings of care (including via digital technologies).
- Phase 2: Qualitative interviews: Semi-structured qualitative interviews with a range of stakeholders (including patients and families, health and care professionals, digital developers/programmers and data analysts) will be used to further explore the evidence gaps identified in Phase 1 in assessing and monitoring of palliative care outcomes in people living with advanced illness and palliative care needs via digital technologies and the potential variation in stages of development and implementation.
Impact
Policy relevance:
- This study will provide policy-relevant evidence on measuring outcomes for babies, children, young people and adults with palliative care and end-of-life care needs, including what is feasible, acceptable, and scalable/sustainable in practice.
- It will inform how outcome data can be more effectively embedded into routine care and used to assess quality, equity, and progress towards the Modern Service Framework “moonshot."
- The findings will support evidence-informed decisions on scaling, standardisation, and governance outcome measurement, with practical implications for service delivery and monitoring.
Project status: Ongoing
Principal Investigator
Professor of Palliative Care (Visiting)